Try this experiment some time. Let’s say the conversation going on around you concerns sports—college, pro, doesn’t matter. At a pause, casually mention, with a straight face, “Did you guys know they’re adding origami as one of the Olympic sports?”

Observe the reactions of those around you. It’s a ridiculous idea, of course. Folding paper is a pastime, a hobby, perhaps an art form, but not a sport. And yet—is this idea all that strange, in the context of what’s going on in the world these days?

I predict (if you can avoid smiling) your friends will believe you. They’ll mutter, “No,” but in a bewildered, disgusted tone. They’re already primed to accept further evidence that the world has utterly lost its moorings and is increasingly becoming unrecognizable.

Then you can relieve them with the punchline: “But it’s only going to be pay-per-view.”

Plausibility is what gives the joke its edge. These days, bizarre changes, affecting everything we hold near and dear, are coming at us as if from a firehose. They keep us off-balance, and I think that’s by design. We can’t push back, not at everything! It might be okay if they were the kind of changes that make daily life more convenient, or if they represented advances in medicine or technology or knowledge of the cosmos. There’s been some of that, thankfully, but most of what we hear about are attacks on things that a lot of us thought were just fine as-is.

I guess news of the attacks makes for good headlines, good ratings. The media companies thrive by shocking their consumers. (Also, a population focused on one big story may miss some other development that the opinion-shapers want to downplay. I don’t need a tinfoil hat to say that much, do I?) And sure, media being what they are, the story is often exaggerated, blown all out of proportion, even (to fall back on an overused word) fake. Also, it generally is not presented as a bad thing. On the contrary, any bad guys as such a story unfolds tend to be the ones who object.

Even recognizing that change has always been an inescapable part of life, there’s no denying that we are suddenly being asked—no, told—to accept without demur radical departures from the most basic, fundamental concepts that have been underpinning civilization throughout history. In academia, industry, and government, people have been installed in prominent, well-paid positions from which they are telling us how it’s going to be henceforth.

Do I need to be specific about the long-held understandings that are now supposedly wrong? I don’t think a bullet list is necessary. You can supply examples, any one of which could take this post down its own zany rabbit-hole. Also, a list would rapidly become yesterday’s news, because it should be obvious to all that the train of upheavals is not stopping. Over the next year, the next five years, and beyond I guess, there will be more. What would it take to satisfy whatever, or whoever, is driving this? What would have to be achieved before the revolution stopped? I think it has already been established that utopia on almost any scale is beyond human grasp. Or is that lesson also no longer true?

Fair disclosure: I’m an old fart. Down through history old farts have been complaining that the world is going to pot, because their remembered or imagined good old days have passed away. I acknowledge that, but the phenomenon we are now seeing is something altogether different. No previous era has experienced such drastic change, driven by a self-anointed set of influencers, on such a broad scale.

Again, I’m striving not to cite examples, because any careless imposition of change, in itself, prompts thoughts of Chesterton’s fence. The fence is a metaphor for anything inherited from previous generations. If we assume those who came before us were ignorant, unenlightened fools, far inferior to ourselves, then we may tear it down without first asking whether it was put there for a good purpose.

Understanding whatever purpose it had, and maybe has, and discussing that purpose in good faith, calls for some critical thinking on everyone’s part. Maybe the time for pulling down that old fence has truly arrived, but we won’t reach agreement if one side relies on ad hominem attacks against the other.

Often, that’s the way these things unfold.

The discord is what led me to type up these thoughts. My sense of alarm has been building for years now, but I began to sense what the best-case solution upon hearing a pastor mention the famous aphorism, attributed to a contemporary of Martin Luther’s, “In essentials unity; in non-essentials liberty; in all things charity.” The pastor was talking about variations in dogma and practice among believers (e.g., whether it’s okay if some Christians celebrate Halloween). I immediately adapted it to the more secular issues that worry me.

What are the essentials in our society about which there has to be unity? In any dispute, that is the question that cannot be pushed aside. No matter how much importance or urgency somebody claims for the cause du jour, is there anything else that we agree must not be sacrificed in dealing with it? Assuming essentials are not in danger, then we are free to find a path forward that respects the rights and interests of those who want a given change and those who don’t. Because of the common ground we share, we should be able to disagree on lots of subjects without saying the other side is subhuman. That’s the charity available in following the above rule.

I still think there are enough of us capable of responding constructively if issues were raised and addressed in terms of our common ground. I think, or hope, most of us still value that common ground.

The alternative would not be a best-case solution. I would be one in which everybody loses, some now and the rest very soon.

One theme very much in favor among authors of speculative fiction/sci-fi is the idea that the reality we experience is one of a perhaps-infinite number of alternative timelines in a multiverse. As someone who has trouble being 100% delighted with current circumstances, I rather like the idea that other instances of myself might somewhere be faring better than I am here, and might even inhabit a better world. There’s a ghost of a sort of comfort in imagining a plane of existence in which certain lamentable mistakes or catastrophes never occurred. But maybe the basic concept isn’t all that new (more on that in a minute).

Authors handle this idea in various ways. For example, one might use it as a workaround for that famous paradox in time travel stories, in which a character goes back in history and makes changes that could result is his never having been born. That scenario could work after all if alterations of events spawned new timelines! The part we’d prefer not to think about is that in a multitude of parallel realities, each one becomes cheapened, perhaps even to throwaway status. If we’re enjoying life in one instance, we’re probably having a rotten experience in another. Nevertheless, the ones we don’t want to think about would be equally real, for somebody.

Backing up a moment, this iteration of the idea comes from the controversial Many Worlds Interpretation (MWI) of quantum physics, which has been around since the late 1950s. According to that theory, this rational world in which we act and then live with the consequences of those actions is only a tiny slice of reality.

On the atomic level (according to Werner Heisenberg and Erwin Schrödinger), one can never be certain about a particle’s momentum and position, or about the state of an object when it’s not being observed. Another way of expressing that is to say (1) all measures of the particle/object are equally possible, and (2) even obtaining one actual measurement/observation does not rule out an unknown number of alternative versions, which still remain valid.

By extension, on the macro level—the one in which we live and act—everything that’s possible is actual, somewhere. Every event that could have possibly happened in our past actually did happen in the past of some timelines, and likewise every possible alternative future is also equally real.

Now, my background in physics is weak, but the analogy does sort of make sense to me, in the same way that a model of the atom—a nucleus orbited by electrons—is comparable to a model of the solar system, i.e., that which seems to happen on a very small scale also happens on a very large scale.

Granted, the theory can’t be tested, because outside of fiction there has been no communication among timelines.

Most scientists object to MWI for a variety of reasons, and all of them would scoff at my puny explanation of it. Nonscientists are probably saying all this is too far out there to be interesting. But if you’ve gotten this far, please bear with me a moment more. I’m not presuming to write about science. I’m also not trying to claim that parallel worlds exist, only to describe a way of thinking about our experience of this world. The idea has been around a while.

Centuries ago, Western philosophers explained suffering by saying that if something is imperfect, there must necessarily be another instance of the same thing that is perfect (Boethius, Consolations of Philosophy; also Plato’s theory of reality vs ideal concept). Our civilization also has the concept of the Divine Being, which created everything and all of us. This Being is not well understood, but according to Scripture is all-knowing and all-good. Therefore, when tragedy occurs, we’re told that there has to be a reason for it. We cannot perceive or understand that reason, but faith and humility are supposed to sustain us. All will be made clear in the Hereafter. Sometimes, however, the tragedy is so acute that we cannot imagine any possible justification.

I think MWI is a secular answer to the persistent human desire to believe that somewhere—even if it’s over the rainbow—a better, more reasonable world exists. It has an allure, even if we cannot experience it ourselves. That is what prompts people to write and read these books.

Just as points of reference, here are links to commentaries I’ve written on a few alternative-timeline fictions that have come my way over the last few years:

• Pastwatch: The Redemption of Christopher Columbus, by Orson Scott Card
• The Midnight Library, by Matt Haig
• 1632, by Eric Flint
• Dark Matter, by Blake Crouch
• Time and Again, by Jack Finney
• Time and Time Again, by Ben Elton
• Replay, by Ken Grimwood
• Elsewhere, by Dean Koontz
• All Our Wrong Todays, by Elan Mastai

Fanciful or not, the basic idea in these stories has appeal—one similar in kind to the appeal of trying on a new shirt, or imagining living in a different house (knowing as we do the imperfections of the house we now have). Or getting a new president, who promises to restore normalcy. Or even writing off everything as a loss and hoping for better in another lifetime.

On the other hand, that appeal ignores the critical fact that the events of any timeline result from choices made by people. And people, even the smart ones, have a well-established history of screwing everything up.

The vast majority of those now in positions of influence or power don’t give any indication of being smart at all. They’re so obviously incapable of contributing anything of value, one almost wonders how they keep their jobs. Almost. They must be doing what their enablers want. But what are the chances of finding a timeline where they aren’t in charge?

I initially felt drawn to this sub-genre because, in looking back over my life, I see various turning-points where even a trivial decision might have (to channel Robert Frost) made all the difference. But alas there are no do-overs outside of fiction. Also, if allowed a do-over, I’d still end up with regrets.

The impulse to arrive somehow in perfected circumstances seems to be part of human nature, and I guess it’s there for a reason. Still, this side of divine intervention there’s no getting around living with what we’ve done, and what others have done, and the luck of the draw.

Maybe it’s time for different reading matter.

In about 1967, as a geeky high school student, I wore a homemade pin to school one day that proclaimed May 24 as Bob Dylan Day. (That’s his birthday.) One of my classmates, more savvy than most, warned me the idea would not catch on, and of course he was right. Everyone else just wondered who the heck was Bob “DIE-lan.”

All these years later, Dylan’s still around, and in fact has even scored a Nobel Prize. I’m no longer an avid fan, but his early songs remain imprinted in my brain. Thus, one night earlier this month, when an online discussion via Disqus happened to segue from talk of the coronavirus to Dylan lyrics, I experienced a flash of quasi-creativity and repurposed one of his oldies as follows:

Well Xi said to everyone “It didn’t start here”
Everyone said “Xi, the facts are pretty clear”
Xi yelled “Silence!”
Everyone yelled “Pooh!”
Xi said “Don’t matter what you might think is true
When I can make every one of you losers disappear!”
Everyone said “All right, so what is it you expect to hear?”
Xi said “Just go repeat what I say on that Western blogosphere.”

Well at home the Donald was feeling irate
His numerous rivals were claiming checkmate
He told his aide, “Their behavior’s just insane”
Aide said “Sir, try not to pull their chain”
Donald said “Pay attention: here comes my best bronx cheer!”
Aide said “Show them instead how to get through this year
Because for most folks the main problem is fear.”

“Well, bean counters,” said the company chief
“If we’re not doing business we need some relief
Payroll’s killing us. We’re gonna come to grief.
I need a way out! I need a fig leaf!”
And the bean counters said “It’s just a temporary change of gear
Folks need to hunker down till there’s an all-clear
At which point they’ll resume their careers.”

Now the aged granny in quarantine
Told her aging son she didn’t feel so keen
“In fact,” she said, “I’m coughing till I’m green”
He said “It’s the nastiest epidemic I’ve seen.
There needs to be some regression toward the mean.”
But the mean, he found, was slow to reappear
He had to stay at home, couldn’t even volunteer
Depleting groceries as life grew more austere.

Now the valiant doctors kept at it every day
Treating the victims from New York to Taipei.
When asked about hydroxychloroquine they’d reluctantly say
“With it there’s a chance of making headway
Or with some other meds, if endorsed by our peers.”
But somehow every hopeful claim met with jeers
From a hundred points of view that would not cohere.

Well the passing weeks brought more and more pain
From vanishing jobs as the threat slowly waned
While petty would-be tyrants added to the drain
Saying “Do as you’re told. It’s we who’ve got the brains.”
Until folks up and said, “This plan is a clunker.
We’ll take our chances; we’ve got to dehunker.
Those who object can remain in their bunker.”

Someone on that thread remarked, “Man, you must be puttin’ me on”—indicating he recognized my source.

Sure, this is derivative. It’s just a way of making a point.

And regarding that point, I added the final verse more recently, to acknowledge the direction this ongoing crisis has taken.

And now I’m adding the whole thing to this long-neglected blog because I cannot avoid seeing it in a personal context—it being this notion that remote authority figures get to dictate the choices each of us needs to be making for ourselves.

That issue came up years ago on publication of my memoir, What About the Boy?, which describes the very nonstandard approach my wife Judy and I took in trying to find help for our disabled little boy.

One reviewer, in the UK, wrote at the time “I was very surprised that … nothing happened when they showed the doctors” the home therapy being implemented. What the reviewer clearly expected to happen was intervention by some authority figure to prevent us from attempting to help our son by unapproved means.

But you see Judy and I had resorted to those unapproved means because mainstream doctors had already made crystal-clear that they would not be helping him. That was the thrust of the first several chapters in the book: Repeatedly, we begged for help and guidance, only to be told nothing could be done.

Despite the fact that they hadn’t even diagnosed his problem.

Our reaction might have been different if the doctors—the experts—had inspired confidence that they knew what they were doing, or that they cared. But our perception was that (1) they knew nothing about his condition, (2) they had no curiosity, and (3) they found all our questions tiresome. So, loving our son and feeling responsible for his well-being, we took it upon ourselves to learn about alternative methods.

I am also reminded of the plight of another family with a disabled kid (in the UK, it turns out) who have no say in the matter of where their son lives or even whether he can come home for visits. They have been fighting that battle for years—and losing it, because their rights, and their son’s expressed wishes, count for nothing. The mum has bitterly concluded their government agencies know a “cash cow” when they’ve got one.

I don’t want to live in a country that doesn’t recognize individual liberty. For sure, each of us can and will make mistakes, and yes of course we should turn to resources for more information. But since we are the ones who live with the consequences of what we do, we need to be able to choose freely.

My wife and I had an imperfect response to our son’s developmental problem. We paid a significant cost, which we didn’t fully understand at the time. But we helped him! I regret that we couldn’t help him more than we did, but I do not regret having given the cause our best try based on what we knew at the time.

Back to this hated virus: Last week an opinion piece in the Wall Street Journal observed that an “overclass” consisting of experts and political figures is “calling the shots for the average people,” despite the fact that “they have less skin in the game.” In many parts of the country these so-called elites are making decisions such as who is permitted to reopen a business or go back to work. There are no consequences to them if they err (and err they do), but disastrous consequences to the citizens affected.

Yes, one may argue, but there is “the science,” the danger of new infections.

Yes indeed, comes the rebuttal, but that does not take all the issues into account. One: There is the economic necessity of avoiding an all-out Depression, and the individual necessities of preserving important things people have worked for. Two: It’s now apparent that the lethality of this disease was drastically overestimated. It’s very bad news for the elderly and for those with underlying conditions like diabetes and obesity. Anything we do must take that fact into account. And evidently people do recognize this. (I do. Given that I was in high school in 1967, you know there’s some risk to me.) It’s in our common interest to resolve this. But you can’t expect everybody to stay home until such time as a vaccine has been created. Nobody who willingly stood down for a while, to “flatten the curve,” agreed to that.

Much of this drama, I am convinced, has less to do with public health than with an opportunity to establish greater power over you and me. Because the people in charge think they know what we need more than we do. I did not give up the right to make choices on behalf of my son, and I believe my fellow citizens see this the same way. We simply must. And, after all, this is also a precedent.

I’m posting this on what would have been my son Joseph’s 34th birthday. Last summer we lost him to melanoma.

Since then, blogging has become difficult. Instead, I’ve been helping folks as an editor/book doctor (see for example the recent releases by Bill Ketchum and Paul Clayton). I’m also serving as a judge in a literary awards competition. Such activities provide a welcome distraction.

The impulse to observe this date with just a few more words came to me as I was listening to an audiobook that mentioned the “Lost” television series. I’d never seen the show, but took note of the book’s description of its concept and aftermath.

In particular, I reacted to learning many loyal viewers of that popular drama felt cheated after the final episode, because they’d expected a meaningful resolution. Having invested emotional energy in the characters and their predicament, over a period of several years, they suddenly found themselves wondering what it had all meant. They’d wanted some kind of takeaway, which author Derek Thompson calls “an a-ha! moment.”

I share that confusion.

I’ve been feeling the same way since Joseph died last summer. He began life an utterly beautiful and much-loved child, but practically from Day One he had acute problems. So his mom and I devoted our lives to finding ways of improving his options and, if possible, to restoring him to the wellness we believed was rightfully his. My memoir dramatizes that campaign.

I wanted my book to be about Joseph, but it couldn’t escape the adult perspective. These were facts of our experience:

• At first, we expected someone in the medical profession to identify and treat Joseph’s condition, but that did not occur.
• Over time, we discovered other families with the same dilemma.
• None of us could really explain what had gone wrong.
• Each of us individually had to come to terms with the fact that the life we’d known was forever changed.

After several false starts, we found providers willing and able to help. Then I believed, with all my heart, that he was on the path to significant improvement, if not full recovery.

From time to time, unexpectedly, surprising and wonderful things happened. Perhaps they signified that this ordeal was some kind of test for us. There was this sense of being hot on the trail of a marvelous breakthrough, something that would not only change his life, and our lives, but also offer encouragement to others. That prospect was more than exciting.

And, you know, it wasn’t a bad way to live, having that kind of expectation.

Then there were the down times, lengthy intervals when progress for him was nonexistent, all objective evidence showed he would never participate normally in life, and my feelings cycled between despair and rage. My love for Joseph never faltered, but my unhappiness was tangible. I could only guess at his take on the situation.

After a few years our home-based treatment program for him ran out of steam (as did we), but Joseph remained my primary concern in life. I continued looking for and trying to implement new ideas. This lengthy phase is summarized at the end of my book.

Then, after several more years, Joseph got sick.

A new campaign kicked into gear. In some respects it followed the pattern of the first, the one I’d written about. I found it necessary to become a difficult customer and insist that he receive competent medical attention, because once again the first providers I’d turned to stonewalled us. Then, again, we found our way to someone with a game plan, whereupon Joseph’s condition improved markedly.

The crisis wasn’t resolved, but as before we became almost comfortable, at least sometimes. Again, we’d achieved an arrangement in which he was impaired but stable. We hoped for the best.

That is, until last spring, when Joseph began a very steep and irreversible decline.

All those years, all that effort, all that emotion—what did it mean? Surely, I thought, it had to have meant something. Poor Joseph had not endured all the discomfort for no purpose. Or had he?

It’s my understanding that everybody tells themselves stories as they go through life. Someone’s story becomes part of his or her identity. A life story doesn’t just say what happened, it says what the events mean and why they’re important.

That’s why I took note on hearing about the above tv series. Here was another case that had raised expectations without providing a proper resolution. I made a point of borrowing some of the episodes in DVD format from the public library. And the basic dramatized concepts felt very familiar:

• The stranded plane crash survivors expect to be rescued, but that doesn’t happen.
• There’s evidence that other people have been in the same situation.
• There are no real explanations.
• It’s necessary to come to terms with a new reality. Their former lives have ended and no longer matter. They are starting anew.

All of the above resonates with me. I recognize it. Do you?

Life can present turning points that we don’t welcome but cannot escape. Surely, that was a large part of the appeal of this series. Viewers saw a metaphor for their own crises.

Also, each episode hints that there’s more to the story, something not fully revealed to the characters. Some of them experience personal growth or acquire new abilities, presumably because of some elusive truth never previously suspected. A fuller understanding of all that is perhaps just around the corner.

This analysis is based on having seen only about half of the first season, but I can well imagine how viewers who’d followed it all the way to the end, through six seasons, might have felt let down when everything just ended.

(And yes, I know there are websites where people brag about having figured it out. There are people who say the same thing about life in general, too.)

All right, there’s the problem. I do not pretend to be unique in suffering from it. A young couple despairs when a long-awaited pregnancy turns into a miscarriage. A hardworking entrepreneur invests everything in a business, only to see it fail due to factors beyond his control. Somewhere in the world, war or cruelty or plain bad luck totally wrecks cherished hopes and plans every single day. When such things happen, as a minimum, one’s personal story needs revision. But what if it no longer makes sense at all?

Coming to terms with this might involve referring back to the above bullet lists.

• Nobody is going to come along and make things all better.
• Everybody is in the same boat (at least potentially).
• We won’t have a satisfactory explanation in this life.
• Might as well accept the new reality!

Maybe that was the intended point of the “Lost” series.

My college roommate, a philosophy major, might’ve called this conclusion “empowering.”

In one episode of “Lost,” the characters, stranded on their deserted tropical island, find a set of golf clubs in the wreckage of their plane. They decide to play golf. Why not?

For me, working with words still feels akin to the pursuit of truth. I may not find anything, but it’s what I most enjoy doing. In that respect, life is going to continue, and I’m going to enjoy it.

As we approach the end of the year, various websites connected with reading begin showcasing the “best books of the year.” Some invite readers to vote on their faves in different categories.

The problem with those competitions is that many if not all of the people voting have read no more than one of the books. How can you honestly say Book X is better than Book Y if you’ve only read X? Or if you’ve arrived at the site because you’re on the author’s mailing list and are being lobbied for your vote?

I can’t participate in that. Despite having read and posted commentaries on 52 titles thus far in 2018, I know nothing about any of the ones getting this treatment.

But as I do every year, I can give honorable mention to my own faves, starting with this:

To the Moon on a Slide Rule and Other Tales of the Early Space Age, by William Ketchum

William Ketchum is a rocket scientist who has been retired since the early 90s. During his career he was involved in developing the Atlas rocket, first conceived as a weapon for potential use against the Soviets and later repurposed for America’s first manned space launches. He talks briefly about some of the engineering challenges he dealt with, and includes short profiles of people he’s known (including Buzz Aldrin). He talks about growing up in California during WWII, about the effect of the war on his father, and how living in that environment led to his career choice. After retiring, he did a lot of traveling, e.g., to Pacific islands where his father had been stationed. He also delves into family history and describes the discovery of ancestors who fought on both sides of the Civil War. There’s a section of “weird” stuff he’s witnessed over the years, and miscellaneous speculations.

The book is open to a criticism that it’s not focused on a single topic. On the other hand, it has something for everyone. There’s even a portion written as if for children, which might be the best of all.

In the interest of disclosure I must acknowledge having edited the manuscript. I worked with Bill Ketchum many years ago, developing proposals to the government for advanced space programs. His request for me to edit this collection of his writings came at a very good time. My son Joseph had just died and I hardly knew what to do with myself.

From time to time in recent years I’ve helped other friends with their manuscripts (two by Paul Clayton, for example, In the Shape of a Man and Van Ripplewink, and others not yet published). I enjoy that kind of work. In the new year I may alter my online presence and offer my talents as a book doctor. Thank you, Bill, for the nudge in that direction!

Here are just a few of the most outstanding books I enjoyed as a reader this year.

Best biography:
How Proust Can Change Your Life, by Alain de Botton

This author was a new discovery for me. Charmed by his unusual point of view and his well-crafted, melodious sentences, I’ve consumed four of his books over the last month or so. This one uses the record of Marcel Proust’s very uneventful life as the starting place for establishing several very practical rules on how to love life, how to take your time, how to suffer successfully, how to be a good friend, and so forth. Despite the focus on a little-read author from a century ago, it’s almost a how-to guide on living today.

Best short story collection
Flying Lessons and Other Stories, Ellen Oh, editor

Inevitably, in any collection of stories some will be better than others. However, there isn’t a stinker in this bunch. My favorite is the title story, “Flying Lessons,” by Soman Chainani, which is about a painfully shy boy taken on vacation by an unconventional grandmother and thrust into real life. But saying that takes nothing away from “Seventy-Six Dollars and Forty-Nine Cents,” by Kwame Alexander, a fetching tale about the fun a middle-school kid has with a newly acquired super-power (the ability to read minds), or from “The Difficult Path,” by Grace Lin, which is a more traditional tale about a Chinese girl sold into servitude (although its conclusion strays toward the realm of fantasy). And the rest are also close runners-up.

Best novels
Never Let Me Go, by Kazuo Ishiguro

I believe the real story here is about the acceptance of unexamined assumptions. The characters are so passive about what awaits them, and understanding of it is introduced, to them and to the reader, in such a gradual manner, that it produces only a vague discomfort. And yet it’s horrific. I believe their situation is meant to represent any condition into which we may be born that, if viewed objectively, would be cause for rebellion. As if rebellion would do any good. Different readers, with their own points of reference, seem to be reminded here of different injustices. In having a message that speaks personally to each of us, Never Let Me Go is like the best art.

The Industry of Souls, by Martin Booth

While visiting the Soviet Bloc to buy scrap iron, the main character, an Englishman, had been swept up in one of the purges by which Stalin populated the gulag with slave laborers. His grim experiences in a mine far below the earth’s surface are balanced by and interwoven with moments in a day many years later (his 80th birthday, in fact) when he’s enjoying his “daily neighbourhood perambulation” around the village where he’s made a new life for himself. There is wisdom here, and the essence of humanity.

The Labrador Pact, by Matt Haig

Matt Haig was another great discovery for me this year. As I did with de Botton, and also Ishiguro, I went on to read and admire several more of his titles. In this one, Prince is a fairly young labrador retriever with the responsibility of preserving unity in the Hunter family. It turns out labs are the only breed still serious about caring for their masters, who, being “only human,” would never manage on their own. The Hunter family has fault lines, and each of its members is being targeted by a bad outside influence. Prince is the only one who sees what’s happening, and the challenge is beyond his powers. I thought this sounded astonishingly close to my life story, which (in a far less poetic manner) I attempted to tell in my own book.

The following is a response I entered to the above question on Quora.com.

Although having a disabled child meant total and absolute upheaval of life in our household, there are many variables. Another family’s experience is likely to be different.

Obviously, one important set of variables is the nature and severity of the disability. A child who needs only a little speech therapy, for example, or who simply needs a little extra time and concentration to complete tasks, is not likely to change things as drastically as one with acute issues. Granted, concerned parents are going to divert some degree of attention from other matters, regardless of the challenge.

The way the parents show concern is another key variable, and this holds true even in families where the kids aren’t disabled at all. For example, thinking back to life as a young married adult, I recall most of our friends had kids before we did. When we hosted parties, they showed up, toddlers in tow, and partied with us into the night. When the kiddos crashed, they flopped anywhere and the revelry carried on around them. Those seemed to be low-maintenance kids, and my impression was that their arrival in the world had not greatly complicated life for their parents. On the other hand, all of us today are familiar with the concept of the helicopter parent—the parent who finds bandwidth to micromanage every aspect of a growing child’s life. For them, parenthood surely brings big changes, although it’s their own choice.

The same dynamic applies in disability. In my book I describe parents of severely disabled kids who did advocate for their kids and certainly wanted the best for them, but who had quickly accepted the disability as a fact of life. I remember a father saying being unable to talk/walk didn’t matter, as long as his child knew he was loved. Another parent perceiving it as a problem that couldn’t be fixed admitted to dealing with the frustration by unloading on her kid—blaming him for ruining her life. (She claimed it didn’t do any harm since he was nonverbal.) Then there were parents like my wife and me who refused to accept that our son’s disability couldn’t be overcome. Yes, we conveyed our love to him, but in our view that love required us to do something extra.

Because our son’s problems were pervasive and rather profound, we had a mammoth task before us. But we chose to dedicate our lives to the campaign. She quit her job. I gave up opportunities for advancement. We focused on trying to understand the problem, and abandoned every doctor, therapist, or educator who didn’t contribute to the program. We stopped taking vacations, gave up on friends who didn’t see things our way, and, having selected a treatment strategy, lived and breathed it for the next four years. Our son achieved some important victories, which improved his quality of life, and those victories encouraged us to keep going. But ultimately, he did remain disabled. Our ultimate problem was that we didn’t really understand what we were fighting. Obviously, we bore significant costs in doing this, and suffered personal consequences. Today, decades later, I still don’t regret the effort, although I do very much regret not having been armed with better understanding.

Why does a family react in one way versus another? That’s probably a separate question, but the answer to this question hinges on knowing what degree of disability you’re faced with, and what kind of response is natural to you.

Given the rate at which I add new blog posts, this is likely the last one that will go up while my son Joseph is still alive. (When the oncologist referred him to hospice services on May 2, the projection was that he had six months “or less.” Then in early June the hospice doctor said the inevitable might be only one month away.)

At the beginning of this phase, Joseph was still very much his usual self. He and I continued to take long walks together. He seemed comfortable and at peace. The hospice people kept phoning and wanting to come over but I argued that we didn’t need them (at least not yet).

Still, they knew, much better than I, how the next few weeks would turn out.

And, undoubtedly, the oncologist had known what to expect for a long time prior to that. He originally presented immunotherapy as a recent breakthrough—a game-changer that meant formerly incurable diseases, namely, metastatic melanoma, might now be conquered! Joseph did have an initial positive response to it, and I responded with optimism.

I clung to that optimism for almost two years, from the summer of 2016 to this spring.

But when the melanoma showed up in Joseph’s bones, late in 2016, and then a few months later in his adrenal gland, the doctor must have known the cause was lost. He didn’t want to tell me, however. Sensing I might not be getting the whole story, I posted a question about the prognosis on Quora, and a doctor there said survival three years post-diagnosis would be unlikely.

When I again pressed our doctor on this, he said in an indirect way that Joseph was on a downward trajectory, and he hoped only to make the slope as gradual as possible.

Having sought an answer, I did not want to accept it. I have a long history of not accepting such answers. But at this point in life I’ve got to conclude that if something is unlikely, for all practical purposes it ain’t gonna happen.

Our culture celebrates the underdog who defies the odds and wins, proving the experts wrong. There are examples! As a boy, Dwight Eisenhower refused to allow a doctor to amputate his leg, and not only did he recover from a life-threatening infection but he went on to play sports, rise through the ranks to become a military commander, and then serve as president. With exposure to enough stories like that, any one of us may be primed to bet the farm on our own long-shot gamble.

We don’t hear about the people who act as Eisenhower did and then die.

Many years before his cancer diagnosis—back in his first year of life, in fact—Joseph’s doctors said he would likely have developmental problems that would affect him throughout life. I swore I would prove them wrong. And, as with the initial response to immunotherapy, I had reason to believe we were indeed heading toward a good outcome.

Even earlier, before Joseph’s birth, I was a hardworking college student aspiring to become a doctor myself. Again, the odds were long. Medical schools were accepting a small fraction of qualified applicants. Even so, I intended to be part of that fraction. Except, as it turned out, I wasn’t. Hoping to maximize my chances, I’d taken a very specialized course of study (histology, embryology, etc.) that did not prepare me for any of the likely job options for newly minted graduates in those days.

Moral: The most likely outcome is the one you’d better count on.

I could list further examples of how this principle has played out. And maybe you could too if, for example, you’ve ever bought a lottery ticket.

Still, are we wrong to dream? Isn’t it preferable to go through our days anticipating some kind of miracle? It’s not only a more attractive way to live, but individually, each of us is probably more attractive when we’re seeking a better reality—as opposed to unimaginative souls who always play it safe.

It’s just that taking this course sets us up for terrible disappointment.

Then there’s the question of faith. Several well-intentioned friends have offered the consolation that a far better future awaits Joseph after he has shed his imperfect physical body. I hope they are right. They can point to Scripture as their authority. Philippians promises that our lowly body will be transformed. I Corinthians says the dead will be raised imperishable. Revelation says “death shall be no more, neither shall there be mourning, nor crying, nor pain anymore.”

I hope that is true. But other places in Scripture say, for example, “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” What About the Boy? recounts what happened when we asked, sought, and knocked. I am not trying to say the Bible is false, but as far as I am concerned it and everything it represents is beyond my understanding. There are quotes aplenty with that message as well. Which makes it rather unhelpful. We can only count on Somebody smarter than us being in charge.

(Whether that’s likely is a question for each of us.)

As I always try to do, I must cycle back and try to view this from Joseph’s perspective. Pain is sometimes an issue for him, but I have no reason to think he grapples with disappointment. I don’t think there are any unwritten anguished blog posts in his head. He just is, as is his destiny. And mine.

Because it’s in my nature to do so (that is, because writing is the way I make sense of the world), I began journaling about my son Joseph within a few hours of his birth. That pastime gained importance when evidence suggested the little fellow might be having unusual problems, and especially when the experts I turned to for answers had nothing to offer.

I remember specific instances of scrawling observations, thoughts, and hopes back in those early days. Being an optimist, I expected the storm clouds to clear (the alternative being unthinkable): His issues would turn out to be not so critical, or—worst case—some specialist would appear on the scene with a remedy. Time passed but remedies proved scarce. I continued advocating for my son in ways that made sense at the time, and likewise continued writing about it. My memoir What About the Boy? was the eventual result.

I said many times that the writing (and subsequent efforts at burnishing, publishing, and promoting WATB) kept me sane and healthy, not to mention energized and very clear about my mission. There had to be at least some benefit of the endeavor, since as my wife Song Yi has often noted it accomplished nothing for Joseph.

Meanwhile, he had entered adulthood. I always kept an ear to the ground for possible new interventions that might enhance his life, but when they never led to anything I belatedly and mournfully faced up to reality.

Journaling continued only in occasional blog posts. Branching out, I tried my hand at verse (such as this) and a few modest short stories (such as this), and especially detailed critiques of the books I read (such as this). You can see from these examples where my focus remained. Looks like I’m stuck on one topic.

To belabor the obvious, all this prating is just documentation of my experience. I thought verbal output might improve matters, but, regrettably, it has all been about me. It has at times amounted to an excuse or an apology offered to myself for not being effective. The memoir’s title was a protest or an acknowledgment of that limitation. Turns out protest too accomplishes little.

Joseph’s point of view is still not easily accessible. Many’s the time I have wished I could spend a day perceiving the world as he does. What if we could trade places! I’d be willing.

Currently, I find myself journaling again. As noted in previous posts on this site, my boy has been ill since early 2016. His doctor accomplished wonders in maintaining the quality of his life during this time, but that gentleman now says the end is near. A hospice provider has been called. So, just as in his earliest days, I’m recording impressions, emotions, thoughts—simply because that’s how I try to cope.

My words are not adequate to the task. In just one short email, Joseph’s aunt nailed the situation better than I could: “It seems so unfair that this has happened after all of your care, your efforts, and your deep love. It is a stab to the heart.”

But again, that’s us talking. That’s our take on it. Although life has dealt Joseph a hand of cards that seems very bad, I, who know him better than anyone, have no idea what he sees in that hand. He can do without the physical pain, for sure. There was more than enough of that earlier, and soon it may be coming back. His inability to communicate hampers our efforts to alleviate it. But aside from that, I look at Joseph, at the person he has always been, and I see a little child. We know what Jesus said about little children. At no time in his 33 years of life has Joseph willfully behaved badly. He has never attempted to hurt anyone—never. He has always tried his very best to be cooperative and to follow directions, even when he didn’t much like them—always.

The truth of who he is puts all my words to shame.

Yesterday, following a typical morning round of errands, I found myself back at home relaxing in my favorite chair when my adult son Joseph approached with a request.

Joe’s requests are not easy to decipher, because he doesn’t talk, or write, or even sign beyond a couple very basic gestures. On this occasion he was tapping his knuckles together, which is supposed to mean “More.” For him, it can also indicate a general dissatisfaction or a request for something undefined. Given the time of day, I had a pretty good idea he was pointing out that it was lunch time. He wanted me to go downstairs and serve up something good to eat.

If and when you understand what’s needed, the simplest response with a dependent like Joe is just to go do it. However, I tend to coach him to make more of an effort to communicate. His response, after walking away and returning a few times, was to take hold of my hand, pull me to my feet, and coax me toward the stairs. At that point I went ahead and put lunch on the table.

Okay, that’s a frequent scenario at our house. It typifies the aftermath of the far more intense, fraught, and manic scenarios depicted in What About the Boy?, and it’s offered here as a lead-in to a meditation prompted by something I heard this morning in church.

(Incidentally, the above graphic comes from a back issue of our church’s newsletter. I’ve been waiting for an opportunity to re-use it.)

The text this morning was the passage in Exodus when God directs Moses to go before Pharaoh on behalf of the enslaved Israelites, and Moses protests that, being “slow of speech and of tongue,” he won’t be equal to the task. But no, apparent disadvantages will not be a problem, the Lord says. “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?”

The pastor’s intent was to say that if you choose to accept a task set before you, you’ll be empowered to succeed. But because Joseph is never far from my thoughts, the “who makes him mute” bit hijacked my attention. In all the years of Joseph’s life, I have never believed it was God that made him disabled, or wanted him so. The Bible is filled with accounts of healing, and I’ve assumed God’s will is for everyone to be whole. When we aren’t, it’s a consequence of something that occurred contrary to His will. But, being in control as He is, God could make things right.

That was always the issue for me. Why doesn’t He? Joe’s mom and I and a great many other people had certainly asked in every way we knew how, over a very long period of time. Surely, we reasoned, God would be glorified far more by Joseph’s being freed from his profound limitations, and by the effect that would have on everyone else.

Enabled or not, I’d thought this was the task set before me, and that success would be something akin to wellness for Joe, or at least acquisition of some options in life.

However, the above sequence regarding lunch is about as constructive as it ever gets around here.

Despite having been to a lot of churches, I’ve never heard any pastor (or anyone else for that matter) address this problem coherently. I now doubt anyone can. As shown in my book, there was a period of time when we were attracted to the promise of charismatic figures like Kenneth Copeland, who says it’s just common sense that we should claim our good (“The sweet by-and-by is fine, but what about the rotten here-and-now?”). I eventually decided human reason and common sense are not relevant in this case.

What is relevant? Surrender. Surrender and gratitude. I understand that to be the correct answer, but saying it with conviction is hard for me. Other aspects of life may go well. But for Joseph, someone’s always going to be helping him with his meals, and with everything else. And I’m never going to understand why.

For the seven years this blog has been in existence, I’ve posted year-end lists of outstanding books that I heartily recommend (books in addition to my own, of course). The latest such list went live in December, and normally I would move on to some other topic at this point.

However, I’ve now (belatedly) discovered a very smart, insightful, and daring author named Ted Chiang. Several years ago he wrote a collection of stories that resemble one another only in that each presents a world mostly recognizable as our own, except for some fundamental difference.

My favorite has to be “Hell Is the Absence of God,” which depicts a very familiar world and culture except for the fact that it receives rather frequent, and very dramatic, angelic visitations. Whenever an angel shows up, some of the people present receive divine healings (cancers erased, missing limbs restored, etc.) but other bystanders are killed—subsequently visibly ascending to heaven, or going to the other place. (Property damage, when it occurs, is “excluded by private insurance companies due to the cause.”) Blessings are dispensed or withheld with no apparent connection as to whether the recipient was devout or deserving.

This is a wonderful exploration of the nature of faith and the age-old question of why bad things happen to good people. I realized near the end that it has no dialogue whatsoever. The telling might be called summary, which usually weakens a narrative. Not so here. It might be better to think of this as a dramatic essay. A typical passage:

“Perhaps, he thought, it’d be better to live in a story where the righteous were rewarded and the sinners were punished, even if the criteria for righteousness and sinfulness eluded him, than to live in a reality where there was no justice at all. It would mean casting himself in the role of sinner, so it was hardly a comforting lie, but it offered one reward …”

Some of the other stories in the collection concern:

• A medical treatment for brain injury that results in vastly heightened performance (think Flowers for Algernon on steroids)

This one’s a standard first-person present-tense narrative told by the patient: “To me, these people seem like children on a playground; I’m amused by their earnestness, and embarrassed to remember myself doing those same things. Their activities are appropriate for them, but I couldn’t bear to participate now…”

• Another treatment that zaps neural synapses to control seizures or addiction, which is adapted as a means of programming people so they cannot perceive physical attractiveness, and therefore cannot discriminate on that basis. “Lookism” becomes a controversy at colleges, where there is an initiative to subject all students to the procedure, i.e., to block their ability to experience aesthetic reactions.

This story is told in a series of statements, almost like responses to interview questions, from various students and faculty members arguing on both sides of the debate, e.g., “This prejudice against unattractive people is incredibly pervasive. People do it without even being taught by anyone, which is bad enough, but instead of combating this tendency, modern society actively reinforces it.”

• An alternate reality in which naming an individual, in a way suggestive of software coding, endows that individual with predetermined qualities. In effect it sounds similar to gene therapy. However, someone immediately seizes upon this capability as a means of controlling human reproduction so as to address “the great fecundity of the lower classes.”

(The tone here suggests the Victorian era, and scientists who might’ve been created by Jules Verne, or maybe it’s steampunk.)

• A linguist called upon to learn the language of an alien lifeform, who applies the new perceptions thereby acquired as a means of coping with personal loss. The telling interleaves two distinct story lines, both in present tense. In one the narrator is talking to her strong-willed daughter and in the other she traces a realization that events occur in more than one dimension. This is the title piece of the collection, and I identify with it so much.

None of the above is very far removed from the reality I inhabit. To some extent, in every story one or more parties want to exploit innovation for purposes that are questionable at best, and that too is believable. Of course, those not supportive of said purposes can also be fallible.

Anyone at all familiar with the issues most important to me (treatments for neurological disability, other potentially life-altering advances, and the confluence of human needs, expectations, and inscrutable grace) will understand why I’m captivated by this. I hope you will be, too. (Incidentally, the collection contains additional stories, and I’m hearing other readers may have different favorites. So this should not be taken as a complete review.)

(According to his bio Ted Chiang is a tech writer. That makes me like him even more. How many of us tech writers have also turned to writing for the outside world?)