What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category random thoughts

 
 

What if This Is Just an Alternative Reality?

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:

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.

When Dreams Crash and Burn

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.

Joseph

Remembering the boy

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.

Recommended Reading

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.

Inevitability

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.

Que sera sera

Thoughts on Stories of Your Life and Others, by Ted Chiang

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?)

Precious Patterns

DLGTDT

A few days ago I finished reading Don’t Let’s Go to the Dogs Tonight, a memoir about a family and a general situation that were both indeed going to the dogs. With the author’s mother sinking into alcoholism and mental illness on top of accumulating family tragedies and the disappearance of the social order they’d always known, I figured the accelerating spiral of events would take these poor folks right down the drain. But actually Alexandra Fuller’s account ended with life simply going on. Yes, her family’s circumstances were diminished. What they’d lost would be lost forever. But they never crashed and burned, either. They still participated in the ongoing adventure of life, with the spirit to appreciate it.

They were not down for the count. By that point, I doubted they ever would be.

So that’s a triumph, of sorts—perhaps the only kind of triumph the real world usually allows.

And yet, as a reader I wanted to see a specific defining moment when they emerged from the darkness. I don’t recall that there was one.

There’s probably a lesson for me in this. A memoir tells the story of a segment of life, and (memoir or fiction) I expect a story to have a denouement that definitively wraps it up. Depending on that final resolution, it’s either a triumph over the odds (like this one) or else it’s a tragedy (like this). I begin to suspect I’ve been trying to force a binary construction on a non-binary world.

I recall my determination and belief, back in the early 90s, that the campaign to save my son Joseph from lifelong disability would reach a clear end point. Anticipating that end—that triumph, mind you (this was not going to be a tragedy)—I’d begun the first draft of a memoir. It explored our motivations. It dramatized the resistance we encountered and the encouraging progress we saw. But now time had passed. Anticipated developments were occurring less frequently. Progress on the manuscript was actually catching up to events. From a narrative point of view, the time had arrived to see the payoff.

Also, we’d also reached a similar juncture in our own lives. We could not indefinitely maintain the same frenetic pace that had prevailed since Joseph’s first year. All my will power was directed to wrapping things up, after which, you know, we would begin enjoying normal life. True, I no longer had anything resembling a clear plan for how to do that (previous plans having pretty much run their course). But we were going to achieve that happily-ever-after, simply because no other outcome made sense to me.

In both Alexandra Fuller’s story and my own, I was looking for a certain pattern. In both, my expectations were defeated.

Nate Silver (founder of the FiveThirtyEight website) has written that it’s human nature to look for patterns in the world. That’s how we make sense of experience. That’s how we interpret data and make predictions and choose courses of action. In literature, that’s how the hero of a story tackles challenges.

Anyone who has been exposed to a lot of stories (and who hasn’t?) has learned to look for a pattern something like this:

storyline

Subconsciously, perhaps, we suppose such a pattern exists, not only in carefully constructed literary works by Tolstoy or Hemingway but also in our own personal adventures.

Mr. Silver warns, however, that our instinct often leads us to find patterns where none are present. He says we’re “terribly selective” about the information we notice and react to. There are far more data points than we can comfortably absorb, so we oversimplify—we ignore evidence that doesn’t fit the pattern we want to see—as if doing so will make that other evidence go away. Then we’re surprised when reality fails to deliver a dramatic denouement, and happily-ever-after never quite occurs.

Well, my story does have a resolution of sorts, albeit painful, messy, and nothing like my expectation. I perceived a conclusion, tied a bow on the manuscript, and pronounced it an honest rendering of what had happened. But then: Life kept right on occurring. Some of the new developments were wonderful, some less so. Reflexively looking for patterns, I saw new ways WATB could have been rendered, as well as material for brand-new story arcs.

Rather than attempting to write another story, however, I seem to have been trying to get a handle on the problem created by these unreliable insights.

It’s natural to look for a pattern. Having found one, we then tend to use it as a basis for thinking we’ve got something figured out (a very comforting sensation). This in turn can lead to arrogance and impatience (believing we’re right, we become indignant when experience doesn’t confirm that) and even intolerance for alternative views (instead of willingness to consider additional information that might invalidate our precious pattern).

For example, I recall feeling very dismissive toward well-meaning people who tried to say my expectations for Joseph might not be realistic. Dammit, he needed to recover from his very significant developmental problems! I knew that. And I believed, based on experience and every cultural truth I’d absorbed while growing up, that problems could be overcome. They were supposed to be overcome. I might’ve been willing to debate methods and tactics but not the feasibility or worthiness of the overall objective.

I still do not think it was wrong to dedicate myself to the cause of optimizing Joseph’s chances in life. I wish, however, our dedication did not result in his mom and me becoming so alienated from potential resources. I knew then—and subsequent observations have proved it many times over—that even acclaimed experts know less than is generally supposed. They too rely on imperfect patterns, sometimes with disastrous results. The prospect of proving them wrong just added extra incentive to the motivation I already had. Nevertheless, in this matter, they probably knew more than we did. The experience of trying to help Joseph did not have to be as costly for my family as it was.

Looking around today, I see an awful lot of the same needless inflexibility and reliance on simplified interpretations that marked our greatest struggle. It worries me a lot. But then I think of how the people in Alexandra Fuller’s story, and my own, continue to muddle along despite unwise choices, heartbreaking setbacks, and unalterable circumstances.

I’m thinking that is just part of the human condition.

What About the Flop?

No

When you resolve to do something, and discover that it’s difficult, do you continue with what you’ve started?

For me, sometimes the answer has been no. I haven’t continued. There have been projects that initially caught my fancy, but before long their attraction just didn’t outweigh the reasons for doing other things. For example, once I thought it would be cool to learn Japanese. But it turned out I had no particular reason for learning the language, and pretty soon life’s daily priorities intervened. I let it go.

But in chasing some goals, no matter the frustration encountered, I’ve stayed the course. The difference is that in those cases I really cared about what I’d undertaken to do. Caring is a function of interest, yes, and also of conviction that the goal is important, and a mental image of the hoped-for change to come. Caring drives one to make the effort necessary to go back and keep trying—and to find another way forward if the first, second, and third avenues don’t work out as expected.

High achievers tell us that process can be fun. For them, the chase is at least as gratifying as the capture, and victory isn’t even very sweet if there wasn’t some doubt along the way. (Some high achievers scarcely acknowledge victories, because the goal they’re really pursuing continues to recede before them.)

Onlookers, meanwhile, may not perceive the extraordinary effort they put into those victories. There’s a temptation sometimes just to admire the end result, without considering how it came to be.

But let’s say we are not especially high achievers, or that the things we crave seem pretty mundane. That doesn’t mean we won’t still find challenges that exceed our current abilities. Finding them, we attempt to improve matters, and fail. After a few tries we start feeling discouraged. That’s natural, but the important thing, motivational speakers tell us, is not giving up: We won’t give up if we truly care.

Everyone likes stories of humble strivers, driven by passion, who finally achieve their dreams—even if, or especially if, the process is chaotic.

I wanted very much to contribute a story like that, which was a reason for writing What About the Boy? Even more, of course, I wanted to accomplish the objective around which that book continually circles: I wanted my son Joseph to overcome his developmental difficulties. I wanted him to enjoy the normal options available to other kids. That’s all. I wanted him to grow up and be self-sufficient. A modest goal, right?

Probably not a reasonable goal, according to his first pediatrician.

His mom Judy and I took him to other doctors, then to a series of specialists, and got nowhere each time. So, trying a different tack, we took him to alternative providers. When therapies were recommended, we implemented them ourselves. When we couldn’t do it all, we enlisted help. Whenever one line of inquiry petered out, we found another.

That campaign is the subject of WATB. Readers of the book may observe that my approach was plodding and steadfast, whereas Judy’s was somewhat mercurial. I thought our styles were complementary. But the story shows that we reached a point at which she could go no further. Literally. Then I stumbled along on my own. Yes, the process was chaotic.

But past a certain point Joseph did not get better. Actually, he regressed somewhat.

This did not occur because of any deficit of caring or tenacity on our part. Other forces were at work. I needed to understand them, but couldn’t.

More recently my focus has simply been on providing the basic support Joseph needs. Still, I kept alive in the back of my mind the question of how I might finally make more of a difference for him. The trouble was that new ideas were no longer forthcoming.

A goal with no realistic means of attaining it is just a fantasy.

So what gives with all the encouragement one hears about dreaming the impossible dream? Never giving up? Winning?

Well, let’s see. You might suggest (as some folks have) that Joseph’s recovery was our wish for him but not necessarily his wish for himself. I would argue my belief that there was never a time at which he would not have welcomed the chance to be a regular kid. But on the other hand he likely did not marshal internal resources in pursuit of that objective the way his mom and I did. Things become a little sticky when the goal is for another person. From his perspective, the intangible concept “wellness” may have resembled my notion of learning Japanese.

That possibility does not lessen my own feelings of frustration and disappointment. As his dad, I continue to want the best for him, and the life he’s had these thirty-plus years is far from optimal. Anyone who thinks otherwise is just plain wrong.

But lately a new thought has come to mind. Maybe overcoming his disability is not my ultimate objective. Maybe, instead of simply trying alternate methods of achieving that, I need a better understanding of what he needs most of all.

Over the last year he’s been up against a significant new challenge. He has metastatic melanoma.

At the low point in this past year, he’d lost the ability to stand up without assistance. He needed a wheelchair to go more than a few steps. And without meds he lived in pain. Intervention from the exemplary staff at the UCSD Moores Cancer Center got him past all that. Now (on good days) Joe and I again take long walks around the neighborhood, as we did in bygone times. He’s usually comfortable. But despite this progress, he still has the illness, and his long-term odds don’t look good. The next treatment protocol has a success rate of only 16 percent.

There was a time when poor odds meant nothing to me, because I believed in beating the odds. Along the way, I’ve lost that conceit.

But now, when I tuck Joseph into bed in the evenings—when I pull that fuzzy blanket up to his chin and he snuggles in for the night—he gives me the sweetest smile imaginable. At that moment, I know I’ve enabled him to experience some happiness.

Yes, it’s modest. But maybe this was my objective all along.

bedtime

Only Connect!

connect

Today a friend told me about this documentary film (and book), Life, Animated, which relates the story of an autistic boy who acquired the ability to speak via his fascination with Disney videos. Apparently (I have yet to see it), the child absorbed key lines of dialog from multiple viewings, figured out how to repurpose those lines for his own interactions, and later added other phrases to his repertoire. Judging from the film’s online trailer, the momentum established by doing that eventually led to his graduation from school.

Now, this is not meant to suggest repeated exposure to videos would offer such a remedy to anyone else—although finding out would be a lot less intrusive and expensive than is usually the case. (I recall short-lived and arguably destructive frenzies over other ways of attacking the problem, many sparked by parent stories just like this one. I too wrote such a book, although its effect seems to have been cautionary.)

josephoct2016

For lack of a better label, my adult son Joseph is also considered autistic. He cannot speak, or initiate any constructive activity. People tend not to talk to him, assuming he won’t understand, although he does. He may not take in everything, but he definitely gets the high points. Unfortunately, the other half of the equation isn’t there. He offers no output, other than infrequent fleeting smiles or more common indications of disapproval or frustration or anxiety. It’s frustrating for the people around him, too, because we’re mostly clueless about what he wants. And pressing for clarity just annoys him, making matters worse.

I’d sure like to believe we could improve on this through something as simple as immersion in videos.

The mechanism for how that would work is fairly clear. One does not have to be autistic to acquire memes or catchphrases from popular culture and adapt them for the situation at hand. If you haven’t used phrases like the following, you at least recognize them in conversation:

  • Beam me up, Scotty.
  • We don’t need no stinkin’ badges!
  • I’ll be back.
  • Nooobody expects the Spanish Inquisition!

You might even collect specialized memes that are recognized by only a small community of people who share your favorite interests. I once knew an English professor who made heavy use of Joycean quotes. A coworker and I used to trade cues from Firesign Theatre.

Psychologists say we share lines like that to establish solidarity with one another. To connect. To acknowledge that we are experiencing life together. Perhaps hashtags in social media are a similar device (#WATB).

But for someone who needs it, repeatable lines also offer a first toehold in the mysterious system of interaction. Don’t we do something similar when practicing a new foreign language? I’m far from fluent in German, but dialog from a long-lost textbook is forever imprinted in my brain (Wo ist Robert? / Er ist in München. / Was tut er dort? and so forth).

This seems to be the process for finding one’s way around in a new city, too. First we figure out landmarks and major roads; then over time we fill in details as needed. That’s how I go about it, anyway. A reviewer of WATB has suggested on Goodreads that I may be somewhere on the autism spectrum, but even if that’s true your approach may be similar.

So it’s easy to believe memes could help an autistic child “make sense of the world he’s living in.”

Alas, there remains a gulf between “could” and “does.” The real challenge is figuring out a repeatable way of bridging it.

Nobody Is Safe

out-of-controlMany years ago, a young mother tried to make sense of the observation that my wife and I had a baby with major developmental problems. Surely, she insisted, Judy must have smoked or used drugs while pregnant—or at least we’d done something to merit that outcome. What was it?

It seemed important to her for that to be true. I think her reasoning was that an absence of explanations would mean nobody was safe. Calamity could then strike her own family as easily as mine.

It’s natural for people to believe they have a handle on things. And, you know, often it seems we do. We have been taught that the world operates on cause and effect. We see that borne out every day. So given an effect, there must be a cause.

Judy and I did more than our own share of looking back for possible causes. In subsequent years I chased the question further.

My son Joseph is now an adult, still profoundly disabled, and I’ve made no progress toward an understanding of why. I do still maintain that an explanation must exist, but at this point that’s just an article of faith.

By the same token, careful action generates desired effects.

A related belief was that, faced with Joseph’s very significant problems, I as his father needed to find a way of helping him, not just enduring and coping with his situation, you understand, but improving it—if possible even completely overcoming it. I accepted that as the life work I was given to do. It would be do-able if indeed my choices and actions had the potential of producing certain outcomes.

It wasn’t the life work I had planned on. When asked about myself, even today I first claim to be a writer. But fatherhood is the role most central to my self-concept. That’s one explanation for the extraordinary lengths to which Judy and I went in trying to give Joseph more options in life.

Throughout his early years we did what we felt had to be done. It wasn’t enough. At the time, a lot of onlookers seemed to think it was a noble cause, a heroic uphill battle, and one bound to have a stirring conclusion. Because dedication and self-sacrifice are supposed to lead to that. In the meaningful universe we’re presumed to inhabit.

The theory is that we are made safe (or safer) by human effort.

While engaged in that battle, I had to confront another disconnect between reality and expectations: In our society at least, families in difficult situations are supposed to have access to helpful resources—doctors, for example, and the whole network of related providers and enablers. But the experts we consulted were neither able to help nor even very interested in trying. Clearly, they saw my goal for Joseph as foolish, but they made no effort to show me why that was the case. Maybe they believed the facts were self-evident.

Some readers of my memoir have expressed doubt that I told the truth about those interactions. I understand. It’s easier to defend our convictions, when presented with evidence that they may not be so well-founded, than it is to confront the alternative: If the system cannot be relied upon to make a difference for people who’ve been given more than they can handle, then nobody is safe.

We, at least, were far from safe. The next challenge to come our way was a diagnosis of metastatic cancer for Judy. I recall hearing some murmurs at that point from people who had previously admired our determination to make things right. Cancer for the mother, on top of disability for the child, was simply too much to ascribe to chance. We had to be guilty of doing something wrong.

jobs-comforters

Again, one might look for causes. Maybe there was an explanation to be found in choices made along the way; maybe it was genes. Who knows! Guilty or not, we had no defense against the facts that it happened, and Judy suffered intensely, and Joseph lost his mother when he was nine years old. (No one has ever suggested any of this was his fault.)

More than two decades have passed since then. I continued as Joseph’s father/advocate, and with help I constructed a new family situation for both of us. I discovered the joys of raising a pair of kiddos who present unusual challenges only infrequently, if ever—good fortune that I’ve not taken for granted. Good fortune or evidence that, yes, sometimes choices and effort can bring about desired results after all.

But Joseph’s developmental difficulties never abated. Looking ahead to the time when I would no longer be available for him, I reflected that, if this were the life work I’d been given, a little more success with it sure would have been nice.

And now calamity has struck yet again. This time Joseph has cancer, melanoma to be specific. It was already in his lymph system before anyone knew, and it has gained a still greater foothold during a leisurely series of consultations, biopsies, scans, handoffs from one physician to another, and efforts to determine insurance coverage (insurance being much more problematic these days than at any other time in my life). In that process, I have again proved to be incapable of altering the course of events. I try to keep Joseph comfortable. I give him pain medication. When he’s anxious I try to calm him.

In his case, what I can do has never been enough—not even close to enough. Nevertheless, time and time again, like a child testing the limits of what he can get away with, I have stubbornly tried to do more for him. Because of my convictions, my programming, my inability to admit defeat.

selfie_w_dad_wAs I sat here writing this, I began wondering how much life would be different if we lived under some kind of curse—if a vengeful deity were consciously extracting the maximum amount of sorrow, granting only enough encouragement to ensure we continued wandering about in the maze. I don’t believe that, but such thoughts do suggest themselves. At this moment, unbidden, my very affectionate nine-year-old has come along and flopped into my lap for a snuggle. Earlier this year, he too had a brush with mortality (a close encounter between a moving car and his bike). I’ve not forgotten my gratitude that he survived.

I am deep in the maze, but take comfort where it can be found.

Two Attempts at Poetry

PoetryMonthPoems because it’s National Poetry Month.

Sonnets because it’s the 400th anniversary of Shakespeare’s demise.

There’s a subtle San Diego theme in the first effort below just because I was responding to a random challenge to write a poem referencing my town.

And there are two because, after finishing the first I felt something more ought to have been said.

I knew more or less what was missing, but it didn’t start to gel until last week when I sat in on a rehearsal of my daughter’s youth orchestra. Those players are more than competent. Put any piece of music in front of them and they can get to the end of it very creditably, first time. But their conductor kept stopping them with admonitions to milk a little bit more out of every passage.

To the flutist, he said, “It sounds [long pause] ‘nice.’ But I want it to sound gorgeous!”

He said, beseechingly, “Trumpets, this is such a glorious cadenza. And Dvorak gave it to you! Celebrate it! ”

To the cellos: “Cuddle that low note!”

After listening in on such advice for a while, I began to perceive that he wasn’t necessarily talking about music. He could just as easily have been talking about maximizing consciousness of the moment, defeating expectations, waking people up. At one point he said, “I want a joy buzzer to go off. Do you know what a joy buzzer is?” I personally didn’t know the term and had to google it. But the message was clear, and it’s a concept I’ve been orbiting around for some time. Goal-oriented people want to achieve their goals. Everything between here and there is just a stepping-stone, of secondary importance at most. But goal attainment, wonderful though it is, remains a small part of life. Many goals are never achieved, and when achievement does occur, we don’t stop there. New challenges take shape, and off we go again. We tend never to be satisfied.

I see this problem when my younger son, Braxton, practices a piece of music on his violin. He appears to view each note as a stepping-stone to get to the end. But reaching the end isn’t really the point. I try to impress that notion upon him but stop and realize I make the same mistake every day.

And so I followed up with the second poem below, as an answer to the first. This too falls short of my intention, probably because I don’t see how the moment blends with eternity, our ultimate goal. Maybe later the Muse will help with a third effort.

trajectory

Trajectories

Brought here to help make rockets pierce the sky,
I joined GD in hopes that we were bound
For Mars, a triumph, no one would deny.
Shortfalls in funding kept us on the ground.

So folks could stay connected on the go,
I joined Qualcomm and thought I was so blessed
To be involved in trends that don’t plateau.
Instead, they crash, I sadly must attest.

Engaged always by pressing family needs,
I sought to serve my hurt son’s climb toward health.
Success in this would top my other deeds.
Just helping him: the purest form of wealth.

Let me finish something before I die.
I strive in good faith, yet time just goes by.

 

in-the-moment

Completion

Of countless runs I’ve made to Urgent Care,
Bearing ailing loved ones, and feeling scared,
None involved news that anyone was maimed.
The upshot was: Things stayed about the same.

Of likely outcomes to prospects each day,
Whether viewed with confidence or dismay,
Most fade as yet other issues arise.
Few fears or desires materialize.

If ends good or bad recede as I go,
If the here and now is lost in the flow,
Maybe the answer lies closer to hand.
Maybe I’ve forgotten: Each day is grand.

Show me a way to put aside this strife.
And know instead every moment is life.