What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

The Book

Once I started reading I could hardly put it down. Ann Beattie.

– Ann Beattie

... more

The Blog

Hello and welcome! This is the second website I've launched that was motivated by the campaign to help my son Joseph overcome his disability. The first, kidsbright.org, was active for about four years beginning in 1999. Portions of it are still in Net archives and may in due course be incorporated into this one. However, that site existed to share information that I'd found to be important when dealing with developmental disability, whereas this one is primarily the home of my memoir.

Looking for Some Good Books in 2016?

audio on wheels

I always read a lot, but consumed at least twice as many books as usual in 2016. That’s because I spent the year commuting a significant distance every day, and needed to occupy my thoughts with something worthwhile. Audiobooks came to my attention a couple years ago, when Kevin Arthur Harper narrated the audio version of What About the Boy?. If you haven’t heard that, please excuse this rare but shameless plug. (Incidentally, the distributor of the printed version went out of business in 2016, effectively taking the title out of print. Consequently, non-audio options are limited to downloading it to your Kindle or Nook, buying it second-hand, or contacting me for an autographed/inscribed copy.)

Every year about this time I share a few titles that have particularly impressed me, with links back to more complete write-ups on Goodreads. Doing so is my answer to the well-known lists of new titles that everyone is supposed to be reading. Since there were more to choose from this time, these are the best of the best. Perhaps one of the following would be a fit for somebody on your holiday gift list. (Oh, and did I mention autographed copies of WATB?)

Audio

Cutting for Stone, by Abraham Verghese, narrated by Sunil Malhotra
I was unable to make much headway in the printed version of this book when I tried some years ago. There was nothing wrong with anything I saw, but somehow the feeling I picked up from the text was one of joylessness. The audio version, with its extraordinarily good voice actor, changed that, and brought this wonderful story to life. To say Cutting for Stone is a story about practicing medicine in Africa does not begin to suggest its drama and philosophical insight, or the depth of every single character—or to convey any sense of the connection a reader can feel with them as, time and time again they find their world isn’t as “intact” as they’d supposed, that despite their planning and expectations, events are going to take an altogether different path. That has certainly been my own experience of life, which is one reason this story appealed to me so strongly (once the audio version made it more accessible).

Cross Roads, by William Paul Young, narrated by Roger Mueller
Here’s an audiobook with narration that’s just about perfect. The narrator doesn’t overdo the accents (British, Native American, Black). He doesn’t call attention to himself at all. But he has a rare ability to add life and dimension to the story, and especially to deliver emotion like the best of actors, and consequently I enjoyed it much more than would have been possible in print format. The first part of the story closely resembles my memory of Young’s earlier book, The Shack. Some of the early dialog feels tedious—didactic if not preachy. But then the plot becomes more interesting. As the frustrated father of a disabled son, I especially liked Tony’s opportunity to experience the perceptions of a boy with Down Syndrome. I loved everything that followed. I sensed the concept was challenging for the author to sustain, but he introduced enough changes and wrinkles to keep me guessing.

The Testament of Mary, by Colm Toibin, narrated by Meryl Streep
This is a startling, disturbing story. At first I felt vaguely repelled by it, because the aged Mary portrayed here is a reclusive husk of a woman, someone who has endured horrors and learned to distrust the people around her, and has long since abandoned any illusions about the goodness or importance of life. She’s nothing like the serene, trusting mother of Jesus we’ve been given in Scripture and doctrine. But I see no necessity for this story to be about Mary, and that’s the main attraction it has for me. It’s a story about how to interpret the anguish we experience in life. I’ve experienced my share. And I continue to do so. I think faith is supposed to empower one to accept that our suffering is part of God’s greater purpose, and to believe that everything will be made perfect in the end. Having mentioned Job in the second blog post linked to above, I should here acknowledge God’s response to Job’s challenges: Clueless mortals were not around when God set up this universe and therefore have no basis for passing judgment. All we can do is trust. I daresay most believers find this very difficult at times. For the Mary in this story, it’s impossible.

Child 44, by Tom Rob Smith, narrated by Dennis Boutsikaris
I admired this, the first of a trilogy of novels about Soviet agent Leo Demidov, so much that I made a point of finding and reading the sequels in quick succession. On almost every level, this is a fantastic piece of literature. It easily ranks alongside 1984. The structure, the pacing, the characterization, the depicted thought processes of Leo and Raisa—all of this feels like the stuff of a true classic. Twice, turns in the plot took me completely by surprise. Further, it’s the kind of story that desperately needs to be told. At times, this author is a little careless with his grammar. I’m puzzled as to how mistakes like his can occur within a work that otherwise demonstrates such prowess in story-telling. Normally, the editor in me would object more strenuously, but for this book I’m only mentioning it.

Abundance: A Novel of Marie Antoinette, by Sena Jeter Naslund, narrated by Susanna Burney
This captivating historical novel begins with the young Marie Antoinette journeying from Austria to become the bride of the French Dauphin. The good-hearted young lady clearly perceives a world completely incompatible with the future that we know awaits her. And until much too late, she’s unable to grasp the notion that the good days she’s always known could actually end. (Their end is the inevitable product of the times, but it’s probably safe to say that end was hastened, and made much less pleasant, by the actions of her husband’s grandfather, Louis XV.) When she does perceive the direction life is taking, her response—in this rendering at least, and quite possibly in fact—is simply noble. Marie Antoinette has been vilified down through the years, but the character presented here is not a bad person.

Print

The Guernsey Literary and Potato Peel Pie Society, by Mary Ann Shaffer and Annie Barrows
Prior to starting this, I had misgivings about a novel consisting solely of letters and telegrams among various people, and I also worried that having two authors would be a drawback to the quality (it usually is). Oh, and the title seemed too cute. All those doubts were quickly laid to rest. This is a delightful story, and it gets better as it goes along. The missives make me nostalgic for the days when people actually wrote letters, on paper. I always appreciated the occasional letter that included wit and thoughtfulness, and in this story the gems are more than occasional. The anecdote about Oscar Wilde that occurs near the end is just delightful. And the ending itself is truly lovely. That’s the best word for it.

The Heart Does Not Grow Back, by Fred Venturini
I picked up this novel because the premise sounded original. A couple chapters in, I felt thrilled with it, because the depictions of youthful relationships (on the playground and then among teenagers) are so deliciously rendered. Then the subject matter becomes less pleasant as the story veers off on an unexpected tack. Dale, the main character, suffers major injuries—but it turns out he has an unexplained ability to heal quickly, regenerating not only skin and tissue but even lost body parts. When he becomes aware of this special ability, he wants to use it, by becoming a living donor of kidneys, corneas, etc. But does he subject himself to all those difficult surgeries because he’s just a very good person? Because he feels an obligation of some sort? Not necessarily. I thought his wholesale organ donations resembled the impulse some people have to adopt stray dogs and cats, or to try and rescue down-and-out people–the idea being to lift them out of dire circumstances and show them how much better life can be. There is kindness in such an act, of course. But there’s also a balance between personal sacrifice and display of power, a balance that can tip unexpectedly after the process has begun.

Time and Again, by Jack Finney
Simon Morley, a bored graphic artist wasting time in an advertising agency, is plucked from that life to participate in a hush-hush project that involves sending agents into the past. He transitions to the New York City of 1882, with the personal agenda of observing and perhaps learning about a mysterious event that has long puzzled his girlfriend’s family. He ends up making repeated trips back, each time endeavoring not to interfere with events and thereby inadvertently alter the course of history. However, it proves impossible to remain strictly an observer; he does interact with the people there, to a far greater extent than ever envisioned. Then it turns out his government handlers back in the Twentieth Century actually want him to get involved, in hopes of engineering a better modern-day world situation. (I’m attracted to treatments of this idea, having a number of intractable problems of my own at present.)

The Confidence Game: Why We Fall for It … Every Time, by Maria Konnikova
Our civilization has to operate on a general assumption that interactions are supposed to be win-win, not predatory. Nevertheless, con artists are a reality. The Confidence Game describes the phenomenon in a way that is both enlightening (from a psychological standpoint) and empowering. Maria Konnikova tells instructive stories of how con artists wrecked the lives of people who ought to have been smart enough to know better. Maybe intellectually they did know better, but “our emotional reactions are often our first. They are made naturally and instinctively, before we perform any sort of evidence-based evaluation.” There are examples aplenty in my own experience, especially in regard to having a child with mysterious developmental problems, and turning to alternative providers when regular doctors did not help him. Unethical caregivers are not the focus of my book, but a few appear in its pages. And the template they use for reeling in fresh suckers became even clearer as I subsequently blogged about having a disabled adult son. Armed by that experience, I may have been a little quicker to spot scams aimed at new authors who seek public awareness of their books. The author explains that our vulnerability to being conned derives from a trait conducive to personal fulfilment and social cohesion. We should continue to expect our transactions to be mutually beneficial. But we also desperately need self-awareness so our intense desire for a certain outcome does not overwhelm common sense.

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.

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

stories

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.

Audiobooks

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.

Please help a disabled boy observe his birthday

TianzeIn the past, this blog has featured poetry by a very special boy named Tianze. Several years ago, Tianze’s family moved from China to the UK. They adapted to a new life in the West while simultaneously coming to terms with the realization that their son was autistic.

By all accounts, he is a talented lad, a pianist as well as a poet, and very sensitive. I’ve never met him in person, but have maintained a lively correspondence with his mother, Nina, since he was very little and have followed his progress all that time.

Tianze was considered high-functioning and in school was mainstreamed with other kids. Beginning at age 11, he began feeling extreme anxiety, which he sought to relieve through repetitive behaviors. His condition worsened over time and he was transitioned to a special-ed setting. By age 15 his behavior had become destructive.

Various drugs were deployed, providing little or no lasting help and sometimes causing undesirable side effects. Tianze continued to experience unbearable mood swings, from anger to sadness, and his behaviors seemed to be an effort to achieve release.

When we hear of such problems, we want to do something. In the past I’ve put Nina in contact with specialists who I hoped would be able to advise her. And I have reported to her any leads I found regarding possibly understanding and actually treating the problem. (For example, I read somewhere that teenagers have a higher demand for folate, which is a basic building block to all neurotransmitters, which in turn may affect thinking and moods. Conceivably, for someone already fragile, such a deficiency might create the condition suffered by this young man.) (I mention that just as an example of the many seemingly plausible ideas that one comes across. This likely is not the answer for him. But one cannot accept the notion that an answer doesn’t exist.)

In looking for help for her son, Nina never thought she would lose the right to live with him or even to make decisions on his behalf. But that’s what happened.

In early 2014, after two years of challenging behavior, he was admitted to a clinic for a few weeks of observation. Then, unexpectedly, his stay there was extended indefinitely. He has been moved a few times to different facilities since then but has never been allowed to return home, even for visits, despite desperately wanting to go home. Worse, he is not being treated. He is being warehoused.

Occasionally, the family is allowed to take him outside to a nearby park.

Nina writes, “I just so disappointed about UK’s human rights toward disabled children and families. Sometimes I really wish to move out of UK, however it is not easy now.”

"Tianze only imagines home, imagines freedom, imagines new Straun [the name of a school he attended before being moved into captivity] every Friday home"

“Tianze only imagines home, imagines freedom, imagines new Straun [the name of a school he attended before being moved into captivity] every Friday home”

As I noted when adding my name to an online petition on Tianze’s behalf, “I too have an older son with developmental issues, and during the years in which I have worked to improve his options in life I have met numerous motivated families such as Tianze’s parents. I know for a fact that any such family willing to provide care for their child will do a better job than anyone else, and the child in question will also be happier.”

For me, the underlying problem here recapitulates very familiar efforts sustained over a great many years that were motivated by the desire to help my own son. Intrusive government agencies never gained much of a toehold in our case, thank God, but I know all too well the endless search for specialists, the independent pursuit of answers, and the intractability of the problem. Not being able to solve that problem is of course behind the more acute problem in which he is taken away from his family.

But again, we’re still left with the need to do something.

Sometimes a simple human touch can mean a great deal. Tianze’s 18th birthday is coming up on November 5. Although he must spend that date incarcerated in the “hospital,” we can try to make the experience a little better for him by sending birthday cards. That is Nina’s request. The address is:

Tianze Ni
95 Barrington Crescent
Middlesbrough, TS3 9HZ
UK

(If possible, try to get attractive stamps for the envelope. Something tells me that might add to his pleasure.)

Might-have-beens

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.

logos

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

Perhaps.

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.

WISH FULFILLER™ QUICK START GUIDE

dandelion

Read Me First

Your new WISH FULFILLER™ accepts a desire in the form of instructions entered via the keypad. Through a proprietary process, it then converts your input into an energized format, which it projects into the world to actualize the result.

WARNING

Our intent in developing the WISH FULFILLER is that it be used only for good. Built-in controls prevent the device from harming another person or overriding another person’s free will (even if you believe the other person may be following an unwise course). Do not attempt to disable this feature. Tampering with factory settings will lead to unpredictable outcomes and will void the product warranty.

Likewise, we believe that you intend to use the WISH FULFILLER for good. Note that humility is important for correct use. Before making alterations in the world, consider that you may not be in a position to know what is good.

CAUTION To reduce the likelihood of unpredictable outcomes, avoid using the WISH FULFILLER when feeling stressed, tired, or angry.

Getting Started

You may enter a maximum of 47 characters, including punctuation and spaces. The WISH FULFILLER does not recognize abbreviations or emoticons.

Strive for clarity of expression. Before using the WISH FULFILLER, take time to ask yourself what you truly want. For example, if you are seeking employment, do you simply want money, or do you want to be contributing something of value to others? Be honest with yourself. Also, be very specific in choosing the words you enter. Avoid ambiguity. Peace on earth would be entirely too vague a command to be accepted by the WISH FULFILLER. Consider that there is peace on the Moon.

CAUTION Avoid using the WISH FULFILLER to achieve short-term gratification. Product testing has shown that such usage results in reduced enjoyment and accelerated generation of new desires. Note also that additional charges apply for excessive data use.

As you contemplate the results of your initial efforts to use the WISH FULFILLER, you will have questions. To learn more about the process of achieving desirable results, consult the user guide.