What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category random thoughts


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


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:


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?


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.


Only 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.)


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.


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.



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.




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.

Threatened by needless complications

tianze1When my son Joseph was very small, his mom Judy and I knew he had some kind of problem. Nobody could say what it was, or what had caused it, and ignorance about the thing confronting us turned out to be another major problem in itself. But we had no doubt whatsoever that we needed to work on his behalf and try to give him some options in life.

Those early years were difficult, but I miss the single-minded focus we enjoyed then, which was reinforced by confidence that our cause was right, optimism that ultimately we would succeed, expectation that Joseph’s circumstances would improve.

That’s just the way things are supposed to work out.

Gradually, the situation became more complicated. My memoir traces that process.

Complicated refers to the intrusion of other pressing issues, on top of the biggie already occupying our thoughts. For us, those issues concerned, first, our finances and then Judy’s health.

But dire though they were, they did not supplant the original crusade. From the perspective I had then—and still, 30 years later, cannot bring myself to renounce—our son’s disability meant a blighted life if it could not be overcome.

I say that knowing many people with various disabilities do enjoy lives that are full and rewarding, and that everyone is hampered by imperfections of one sort or another. Each of us muddles through, regardless. The healthy response is to capitalize on our strengths and find a way of deciding the process and results are acceptable.

But Joseph’s problem could not be compensated for, or papered over. However it might be defined (I still have no useful name for it!), the thing resisted all such efforts. As he grew older, his limitations became ever more painfully obvious.

WATB includes a brief meditation that compares “acceptance” with signing to take delivery of a package, i.e., willingly claiming the unwanted condition. I could not do that.

I could continue to love Joseph, and see to his basic needs. And I could look after myself. I remarried after Judy’s death and started another family (in which I continue to find great happiness, btw), and then very gradually, over a period of years, I conceded defeat in the campaign to rescue my firstborn. Extraordinary efforts had not made the difference for him. I could not justify further efforts, and so I adapted.

This does not mean I am pleased when I consider the life he is living. This week I had occasion to visit the day center where he spends most of his waking hours. Although the staff were busy, some of his peers wandered about aimlessly or appeared totally disconnected from their surroundings. One needed to have his pants changed. Joseph meanwhile was vocalizing loudly, as he occasionally does when dissatisfied about something. So many times I have told him how much better off he’d be if only he found a way to communicate. I am pretty sure he doesn’t like to hear that. Not speaking (or writing, or signing) is part of his disability. Which, again, cannot be changed. I now get that.

Still, it seems reasonable to consider whether some part of these circumstances might be made better. Putting aside the disability itself, can we not make a little headway with related matters, or at least with any of the complications that arise from time to time?

Despite all the difficulties encountered along the way, I have always been thankful for the fact that, throughout Joseph’s life, no one has challenged my right to make decisions regarding the care he receives. I am his parent, and his conservator. Other people are welcome to offer advice. But if, for example, I find a better option than the day center mentioned above, I am free to move him there on my own authority (as I’ve pulled him out of other places in the past). I might make mistakes, and admittedly have made mistakes. But I believe the decision-making should occur as close as possible to the person directly affected. If at some point Joseph became able to decide things for himself, I would be absolutely delighted to let him. Until then, as long as I remain competent, I’ve got the authority.

That is why I am outraged every time I hear of families with disabled children being denied that right. If a kid is able to indicate a preference in a matter such as living at home rather than in a restrictive institution far from his home, and if his family has the same desire, an outsider would need to make a very strong case for standing in their way, even for a little while.

I’m thinking in particular of Tianze, a young fellow who has been mentioned on this blog in the past. For an astonishingly long time now, officious government agencies in the UK have denied Tianze and his parents their basic human right to make decisions concerning their own affairs. They are denying him his freedom, as if he were a criminal, despite objective evidence of the harm this action is causing.

As I said before, complications have a way of creeping in. A family starts out on a pure quest to help their disabled child. It’s certainly sad enough when they bump into the limits of human knowledge and ability, and are unable to move their child closer to the wellness he deserves. Other frustrations—fatigue, penury, illness—may be unavoidable facts of life. But I would redouble those frustrations before I willingly ceded power to an agency that might never give it back.

Clicking the above image will take you to a video made on behalf of Tianze and other kids in the same situation. I’m sharing it because I perceive a trend in which we as a society are ever so slowly handing over control of our lives to unaccountable functionaries. If we continue doing this, we will never get it back.

Nor, I suspect, will our original problems be any closer to resolution.

Why and how to tell a story effectively


One consequence of having written a book, and having acquired a reputation as an editor, and being willing, is that I’m often asked to critique early drafts of other writers’ creative efforts.

For a great many years I’ve been handling technical literature (usually quite different from fiction, although some principles apply in either case). But the long process of finalizing WATB involved participation in several workshops and critique groups, which seemed to awaken a greater sensitivity for what works or fails to work in writing. Also, to keep that perception sharp I formed the habit of exercising it via reviews of every book I read.

Sadly, I no longer write much at all. Events have distracted me from that kind of thinking. But I still delight in great writing when I see it, and look for the features that make it great. And I enjoy contemplating ways in which writing that’s merely good might become great.

It’s a matter of communication. People respond to stories. If you need to convey an important message to others, consider making a story out of it.

Coaches for job applicants insist that information presented in story format is more likely to make an impression on the hiring manager. In fact, managers now expect memorable situation → action → response anecdotes for every trait a candidate claims to offer.

Likewise, good business proposals promise an unfolding sequence of events in which the recipient’s need is transformed into success, with minimal fuss and at an acceptable cost.

The same process goes on in courtrooms, as well. Having served on several juries, I’ve observed the way trial lawyers sought to influence my peers and me through compelling stories.

But stories don’t always achieve the desired result. In every legal contest, one side loses. During my days as a proposal development specialist, I helped assemble some excellent bids that met with rejection. There’ve been many job interviews in which I failed to convince decision makers that I was their ideal choice. And publishers are forever receiving, and rejecting, manuscripts. Way too often, readers of published books also put them aside, regretting the time spent.

So the simple act of verbalizing a message is not enough. Before it is shared, any important communication deserves, as a bare minimum, reflection and self-editing.

It’s easy to find checklists that condense that process. Bullet points may oversimplify things, but like the guidelines they seek to convey, they’re a helpful device. High planes of achievement may call for a bit more than these examples, but here’s a start:

  • Shoot for a beginning that will convert a casual reader or listener into someone who willingly puts everything else aside.
  • Unless you are writing for or talking to yourself, be mindful of the takeaway your audience needs to have.
  • Don’t let that audience become distracted by needless ambiguities or doubts concerning your ability to get to that takeaway.
  • Except in cases where details would be a distraction, be specific. Use real people, real events, real dialog.
  • Strive for short paragraphs, short sentences, simple words, active voice.
  • Use analogies and metaphors. Such devices help people visualize and connect with your subject.
  • Consider withholding a key or startling piece of info until the end (as Paul Harvey used to do in radio bits that “turned news into narrative”).

We all have stories to tell. When we tell them effectively, everyone benefits.

An edited version of this blog post also appears in The San Diego Reader.

Books Enjoyed in 2015

books and audio

As happens every December, people are announcing and/or voting on the best books of the year. And as always I find that despite having absorbed over four dozen titles in 2015 I have not touched a single one from any of their lists. (Possibly that’s because I’m still working my way through books written long ago.) For the last five years my response to these lists, since I preserve my thoughts on everything I read, has always been to share my own favorites.

This year’s list is divided between books enjoyed in audio and print format. I’ve acquired a new interest in audio because my memoir, What About the Boy, appeared as a downloadable audiobook early this year. Also, I’ve done a huge amount of driving in recent months, and relieve the tedium only by incessantly popping CDs of audiobooks into the dashboard.

Feel free to click the titles below to see more complete write-ups.


Thirteen Moons, by Charles Frazier

Sometimes when driving while listening to an audiobook, I have found that the complexity of the narrative, in combination with the challenges of staying alive on the freeway, obliged me to play a CD more than once. With Thirteen Moons, I replayed the first disc simply for the pleasure of listening to Will Patton declaim that luscious prose.

It’s the story of Will Cooper, who begins life very early in the 19th century as an orphan. Sold into bondage by his aunt and uncle, he travels into the border region between an unidentified southern state and uncharted Cherokee territory, there to run a trading post (taking in animal hides and ginseng in exchange for fabric and plow points). He comes of age under the influence of two surrogate father-figures, a full-blood Cherokee named Bear and a treacherous rascal named Featherstone. He finds the love of his life in a girl who already has a complicated relationship with Featherstone. He purchases his own freedom, educates himself through close study of literature and the law, and later travels to Washington in hopes of preserving some vestige of Cherokee rights and land from advancing white civilization. Along the way he meets well known historical figures like Andrew Jackson and Davy Crockett (and no doubt others I failed to recognize). He grows old matching wits with various government functionaries, rising to elected office, and even participating in a few skirmishes of the Civil War. He recounts all this in an age of horseless carriages and primitive phonograph machines, observing that “it’s a bad idea to live too long. Few carry it off well. But nevertheless, here I am.”

This package of CDs, which dress up both the story and the telling with fetching mood music, is surely the best way to experience Frazier’s novel. I thought it was wonderful. I admired his first book, Cold Mountain, when it came out several years ago, but didn’t realize until now what a first-rate writer he is. Thirteen Moons might just be the elusive Great American Novel.

Noah’s Compass, by Anne Tyler

Anne Tyler’s favorite character types tend to reappear in different stories. For example, in Noah’s Compass shy, reserved Liam resembles Macon in The Accidental Tourist, and also reminded me of Jeremy in Celestial Navigation (which I recall with a shiver from a reading at least 15 years ago).

These men are pretty much taken for granted by their families. They are realizing belatedly that they’ve been passive bystanders in their own lives, and after being shaken up by an upsetting event they notice that they’re just barely coping. In fact, they are winding down, and are somewhat alarmed by that, but don’t know how to ask for help.

I wouldn’t be surprised to know that a lot of guys see something of themselves in these portrayals. I do. For years I’ve said that Macon Leary is the character in fiction with whom I most closely identify. And now, like Liam at the beginning of Noah’s Compass, I’m a recently laid-off older worker.

It’s a touching and very sweet story, populated with characters that I recognize. I knew almost from the start not only that I would give it five stars, but that if I can give only five stars to books like this, I’ve been too generous with stars in some other reviews.

Homer & Langley, by E.L. Doctorow

I was pretty far into this beautifully told (and narrated) tale—about two highly eccentric brothers living in Manhattan, one blind from an early age and the other given to a kind of brutal nihilism—before suspecting that the characters might’ve been real people. A quick online search then revealed that a Homer and Langley Collyer did indeed lead infamously reclusive lives for many decades in a Fifth Avenue brownstone, until being found dead there in March 1947. (Langley had died after triggering one of his own booby traps; Homer then died of starvation and neglect.)

E.L. Doctorow builds on the available facts, taking the perspective of Homer (whom he has typing it out using a Braille typewriter).

The brothers’ increasingly cluttered and dysfunctional house, a magnet to misfits and even to a latter-day de Toqueville, is surely intended as a metaphor for the country they live in. I’m not sure we are given a reason for why this has to occur as it does. Homer traces the steps, beginning with a recollection of the days when their parents led grand, high-society lives in that same house. He senses the “shame” that ought to be attached to what has happened, and perceives the frightening trajectory they are on. Yes, it’s clear to him that the story will not end well. Perhaps in an effort to compensate, his prose becomes increasingly lovely as the facts presented become more grim.

Calling Crow, by Paul Clayton

This one is kind of special, because I know Paul Clayton and know he’s a worthy author with important things to say, and also because Calling Crow is narrated by Kevin Arthur Harper, the same voice actor who rendered What About the Boy?. I shouldn’t comment on the content, however, because I’ve not been able to listen to it as easily as I have books on CD. Like my memoir, it exists as a downloadable file. I can see how this format offers certain advantages, but given my listening habits and the equipment available to me, accessing it has been awkward. Consequently, I now understand those friends who encountered technical difficulties with WATB. No doubt this has something to do with our being of a certain age. I hope you will conclude that I’m a hopeless Luddite and will listen to Paul’s great historical novel anyway.

UPDATE: I did finally manage to hear the audio version of Calling Crow. My impression is recorded here.

Print books

I Love Dollars and Other Stories of China, by Wen Zhu

I can’t think of another collection of stories that I’ve appreciated as thoroughly as this one.

On one level, having spent some time in China, I recognize features that might seem bizarre to Western readers, such as the sidewalk scenarios—the lengthy confrontation with the shopkeeper who insists that a passerby pay a fine for having dropped litter outside her door, or the challenge of the old granny to a man who inadvertently rolled his trailer bicycle over a tomato she’d dropped on the ground. But I think Wen Zhu draws out these points of friction until they become caricatures.

These stories do not indulge any saccharine preconceptions we may cherish about the way this world ought to be. Instead, they shine a brilliant light on the world as it often is. And in the process they somehow made me laugh several times.

Housekeeping, by Marilynne Robinson

Within the first few pages, I knew this was going to be something special. It’s a story told by Ruthie, the older of two sisters living in “a meager and difficult” little town on the edge of a massive lake somewhere in northern Idaho. Long before their births, these girls as well as the three sisters in the previous generation were dragged to this dreary location, like train cars behind a locomotive, by the grandfather who relocated here, and who was then in turn dragged to the bottom of the lake when the train he was riding derailed and slipped off the bridge “like a weasel sliding off a rock.”

Here, the concept of “housekeeping” means trying to make a go of a setup that feels fragile and fundamentally temporary (a perception that may be conscious in all households for all I know). Ruthie and Lucille have always lived in rather tenuous circumstances. It’s somewhat disturbing, in a way reminiscent of Cormac McCarthy novels, but I have the feeling this is pretty close to the truth.

The Lazarus Project, by Aleksander Hemon

Vladamir Brik, currently unemployed and married to an eminent Chicago brain surgeon, has conceived the notion of writing a book as a means of overcoming his sense of mediocrity.

The subject of that book would be an incident that had occurred 100 years earlier, but the telling becomes interwoven with Brik’s own life. The two parallel stories dramatize essentially the same theme, which is the effect of one party having “unlimited power over someone else’s life and death.”

Brik indulges in some confused speculation about the biblical Lazarus, who was raised from the dead. If people with status, governmental authority, or even a momentary advantage will always make this life so disappointing, perhaps hope in life after death is the only answer. Not that Brik is in the least bit religious. I should mention that, despite this rather grim view, the book is actually quite enjoyable, largely because of the quality of the prose.


driving around

Driving around

This lovely Saturday morning, the start of a long-awaited extended weekend, found me out and about on a few unhurried errands in the neighborhood—trips to the shop for an oil change, to the library to replenish the supply of audiobooks (my reaction to the latest one is here, fwiw)—little things that needed tending to prior to heading off to a party later in the day. It’s probably revealing for me to admit that a simple outing like this felt like something to relish.

I almost said this was in the OLD neighborhood, but we do still live here. However, a few months ago I began a new job at a location 50 miles away. Now on week days I’m barreling up the freeway at first light and feeling too bushed in the evenings for more than the occasional good-faith effort to help the little guy with his homework. So I no longer see much of the home turf. But I sure enjoyed this opportunity to cruise around a bit at my own pace.

By chance, I passed the building where I’d worked for many years until a certain unnerving development occurred, about which I wrote earlier. I also passed the headquarters of Illumina, which had been the first potential next employer to catch my eye (before I understood the challenge of getting past that company’s HR firewall).

Then, as I continued making my rounds, without intending to I happened to drive within sight of seven (7) of the many places of employment at which I’d interviewed for work during my epic job search earlier this year.

Local history

Okay, living in one area for any length of time has the effect of gradually imparting history and personal significance to every street corner. Surely this is true for you as well. Wherever I go in the few square miles closest to home, I’m passing sites of various remembered little adventures and misadventures (any of the parks where I used to take my disabled son Joseph, for example, on the timed marathon walks that were part of his therapy; the clinic where his mom got her cancer diagnosis; the house of a great friend who has long since moved away). That’s to be expected. But today it was a little startling to notice in quick succession so many buildings within which I’d recently made all-out efforts to sell myself.


I’ve changed jobs much less often than is the norm, if LinkedIn profiles are any indication. But in previous experience, periods of transition involved the merest handful of interviews. This time the process seemed endless. (One wonders if it ever does or even should end, for anyone still in today’s workforce, but that’s a separate topic.)

At one of these companies, a place where I surely would have been a perfect fit, and expected to be a shoo-in, the process inexplicably went off the rails. When I inquired, the manager said apologetically that a former employee had become available and they’d rehired him, because “better the devil we know, and so forth.” Another employer did offer to hire me, but on terms that amounted to what Don Corleone might’ve called an offer I couldn’t accept. In most cases, I have no idea what happened behind the scenes. I’m pretty sure some advertised openings were never filled by anybody (perhaps because of budget issues or because of ambivalence about the notion of adding an honest-to-gosh writer to the staff (some companies expect engineers or marketing folks to do their writing)). No doubt, in discussing their candidates some hiring managers referred to me as “the old guy,” and made decisions on that basis.

The job I eventually took is far removed from my normal geographical circuit. Hence the commute (and the need for audiobooks), and the sense of returning to former haunts on my day off.

How did I get here?

In his famous poem about roads not taken, Robert Frost assumes that the traveler is the one making choices, deciding (albeit perhaps with misgivings) not to follow one course of action in order to pursue another. Likewise, there are motivational speakers who insist that the path to success involves commitment to a goal and refusal to be deterred by life’s obstacles and distractions.

All that is fine and true, inspiring and empowering, but also sometimes destructive, I think. There is going to be a way forward, and it’s very cool when unfolding reality coincides with plans. But despite our very best intentions that way forward often deviates drastically from the plan. What happens then?

And there’s the claim, which also has merit, that we’re better off letting destiny, or God’s perfect plan, unfold as it will. For example, perhaps there’s a perfectly good reason why finding suitable work at this point in life is so difficult for me: Perhaps the time has come to hang up that green eye shade, call it a day, and open up to the possibility of doing something else.

Green eyeshade


But then I remember Joseph. (Just about all of my posts come round to Joseph sooner or later.) When the best efforts this family could muster did not succeed in overcoming his profound developmental challenges, the only option remaining was to allow destiny to take its course. That course has included wonderful blessings, for the family. For Joseph himself, not so much. No one could honestly maintain that his current state compares favorably with that of any representative nondisabled person.

Some of life’s directions appear to be inexplicably bad.

But beautiful Saturday mornings come along on schedule anyway.