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.

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?)

Peak Reading Experiences of 2017

What are you reading?

This blog came into being as a backup to the memoir I wrote about raising my disabled son, who’s now 32 years old. In the years since publication, I’ve posted occasional updates about Joseph as well as odds and ends about striving in general.

I used to think the campaign to improve my Joseph’s prospects would be the ultimate uphill battle of our lives, but recent years have brought major new challenges. For example, in early 2016 he was diagnosed with melanoma. Since then he’s had some very low times, but excellent medical care keeps him going. Simultaneously, I went through a three-year period of unemployment and marginal employment—from which I’ve only recently emerged. As we finish out 2017, Joseph is comfortable and in good spirits and I am finally beginning to breathe easy regarding my prospects for continuing to support the family.

Going forward, I don’t expect to be reading as much as before—because I’m no longer commuting as much—but right now I can choose from a vast array of titles consumed this year to offer the following recommendations of my faves for 2017 (in no particular order). And by faves I do mean the best of the best. I encountered more than the usual number of outstanding books this year. Long-distance commuting did have an upside.

Clicking the titles below will take you to more complete write-ups on Goodreads. And, fwiw, my lists of books for previous years are here: 2016, 2015, 2014, 2013, 2012, 2011. By the way, printed copies of WATB may not be so easy to find these days (unless you contact me directly), but ebook and audio versions are still available.

Wonder, by R.J. Palacio

If you’ve seen or heard about the movie (which I also recommend), you know Wonder is the story of a 10-year-old boy who until this point in life has been sheltered from the outside world because he has facial deformities. But now his mother has decided the time has come for him to venture outside the protective bubble. The process does not go smoothly.

This story strikes close to home. Joseph has an unnamed condition that, like August’s, is probably genetic. His physical abnormalities are subtle, but in terms of function he’s profoundly disabled. It’s a matter of opinion as to which would be worse, this or August’s horrible deformity coupled with normal intelligence and ability to communicate. Either case means hitting a lottery nobody wants to win.

The author’s intent is to ask how the rest of us will treat people like August. One of the characters says, “The universe was not kind to August.” True, but we can be kind. In doing so, we may even discover a greater affection for ourselves and for one another.

When Breath Becomes Air, by Paul Kalanithi

This book is at the intersection of subjects that have been very important in my life, memoir and medicine, literature and illness, striving and accepting. It has additional gravitas in being the only, somewhat truncated literary effort of a young physician who’d thought he might do some writing in old age but altered his priorities upon the discovery that he was dying.

Seen in its own terms, his story is absorbing, poignant, tragic. I see it in terms of my own experience, as the author and I are almost mirror opposites, but it can speak to anyone, especially in terms of our efforts to maintain control over circumstances—and what to do when that control is gone.

The Pleasure of My Company, by Steve Martin

Somewhat lighter fare here! Daniel Cambridge enjoys the presence of several attractive women in his life: the wannabe shrink who comes by twice a week to evaluate his progress in overcoming neurotic habits, the pharmacist who fills his prescriptions, the neighbor who doesn’t know visiting with him is so enjoyable because he spikes her drinks with small doses of his meds, and the realtor who thinks she’s going to rent him a new apartment.

This story is laugh-out-loud funny. It’s also heartbreaking, because Daniel’s situation is so recognizably human. Ultimately, it’s mind-expanding, life-affirming, beautifully structured, and just plain good.

The Other, by David Guterson

As one grows older, and looks back at the turning points of life, it’s probably natural to wonder how differently one’s story might have unfolded with a few different decisions. Neil Countryman and John William Barry are alike in many key ways. Both love hiking in remote areas of the Pacific Northwest. Both have an intense desire to do the right thing, regardless of the cost. In a sense they could be viewed as different iterations of the same man, and Guterson’s description of their different fates could be this kind of meditation.

I’ve probably read everything by David Guterson (who’s best known for Snow Falling on Cedars). He never disappoints, but this might be his best to date.

All Our Wrong Todays, by Elan Mastai

Here’s another treatment of the theme of alternative paths. But its main thesis is that every good thing has a fatal flaw—a way in which it can become just as bad as it was good. The big question is how one claims the good while avoiding/minimizing the bad (or whether one has enough information to judge).

Aside from that philosophical speculation, the story works fine on its own terms (it’s sci-fi), and there’s wonderful dialog as well as a great many quotable epigrams. (BTW, my best books for the year are books I was lucky enough to read this year; they aren’t necessarily new. However, AOWT was published in February 2017. Take note of this author. I expect he has more great stuff on the way.)

The Dead Fathers Club, by Matt Haig

Several books crossing my path of late have been modern reinterpretations of classics. This re-imagining of Hamlet, narrated by the juvenile heir of a British pub, is my favorite of that lot. One reason for liking it is that, rather late in the story (and just in time), it departs from strict adherence to the original. When doing so makes sense, authors should treat their characters with some degree of benevolence—especially after making us care about them.

Let the Great World Spin, by Colum McCann

There’s worthy precedent for a large, sprawling novel set on a specific date, in the context of known historical events. I’m thinking of course of Ulysses, which is a very tough act to follow. Kudos to Joyce’s countryman Colum McCann for rising to the challenge.

He does not merely make us care about his characters. I for one realized partway through that I loved them.

The Book Thief, by Marcus Zusak

“Even Death has a heart,” we are told, and I guess we should believe it since it’s Death himself who says so. After all, he cares enough to serve as the narrator of this wonderfully devastating story about people striving against the odds to stay alive. It’s an extraordinary story, with exemplary use of language, and the audio version is just superb.

Pearl of China, by Anchee Min

Willow, the narrator of this novel, describes life in rural China beginning in the waning days of the Qing Dynasty as she grows up alongside Pearl (later to become the real-life author Pearl Buck). Arriving at adulthood with causes for sorrow, both women begin finding consolation through writing. New troubles ensue when Pearl encounters social engineers who are birthing the new communist state. They want to censor ideas not supportive of the Grand Revolution, whereas Pearl argues that readers should be free to decide for themselves what to read. In due course she is exiled and Willow endures the imprisonment and reeducation that are familiar from so many other accounts we’ve had from that country.

The conclusion is very touching, and a reminder that this has less to do with turmoil in China than with affection between two soul mates. If Willow is a fictional creation, I suppose she represents the author’s response to learning, many years after Pearl Buck’s death, who this woman was.

Oracle Bones, by Peter Hessler

This first-person depiction of China joins a long list of similar accounts I’ve read over the years. It feels like a memoir, although a unifying narrative arc is not obvious. There are narrative threads, of course: concerning not just the author but also the friends he made there. I was quite taken by his own challenges (surviving on a freelancer’s uncertain income, offering friendship across a significant cultural divide, avoiding arrest). For context he weaves in background regarding both ancient history and recent trends in Chinese society. I especially appreciated his commentary on the origins of and logic behind Chinese writing (speculative though those origins may be). Despite abrupt transitions, it all hangs together naturally, and I’m very glad to have read it.

(Incidentally, I enjoyed an email exchange with the author after my commentary appeared. He’s still immersing himself in and writing about other cultures and no doubt has more excellent books on the way, all of which I hope to read.)

Grit: The Power of Passion and Perseverance, by Angela Duckworth

My list would not be complete without at least one more nonfiction representative, and especially (given my fixations) a title concerning goal achievement. Grit amplifies the concept expressed most succinctly by Edison, about success being mostly perspiration as opposed to inspiration. That is, while it’s great to be talented and clever, etc., tenacity is the most important trait. From there, the author provides specific steps for applying tenacity to actual achievement and persevering through setbacks and adversity.

From magic beans, to machines

beanstalk

We all know the story of Jack, who lived in poverty with his widowed mother, foolishly traded their only cow for a handful of beans, climbed the enormous plant that sprouted overnight from those beans, and came back with a fortune (which, we are assured, was rightfully theirs to begin with).

That’s nonsense, of course. I’m not sure such tales are even being passed along to children these days, the way they were in times past. They’re based on a world view so incompatible with our own as to be embarrassing.

On the other hand, in a recent online article Richard Fernandez argues that we may be more inclined than previous generations to put our faith in something akin to magic.

“Two hundred years ago,” he says, “the average person probably understood virtually everything he encountered in daily life. Today the average person is surrounded by objects far more complex than the Apollo 11 guidance computer.” Most of us do not even begin to understand how those objects work. “Technology has allowed the burden of intelligence to be shifted away from the user to the machine. As a result people routinely use tools they barely understand, implicitly believing they will work.”

Fernandez presents this as a potentially scary turning point in the progress of civilization. He cites the most famous of Arthur C. Clarke’s Three Laws: “Any sufficiently advanced technology is indistinguishable from magic.” And what is magic if not wish fulfillment? Our gadgets and other resources have empowered us to the extent that wanting something is now step one. Step two is having it.

So what if attainment comes via mechanisms we don’t entirely understand!

I must have been circling this idea a few months ago when I wrote a facetious user guide for a Wish Fulfilling Device. (At the time I saw that exercise as a writing sample, in case a potential employer wanted to see what I could do; my real technical writing was all proprietary.)

But this outlook has affected my thinking for a very long time. It goes back at least to the birth of my son Joseph.

When his doctor presented the first clue that something might not be right with him, I immediately thought modern medical technology surely had an answer. If we had a problem, my faith in science held that some specialist, somewhere, would know what to do. Anyone trying to say otherwise was just ignorant. That belief started my family down the path described in my memoir, What About the Boy?

The ultimate thrust of the Fernandez article is socio-political. He’s writing about people who suppose our advanced society liberates them from causality, i.e., enables them to avoid the consequences of having done “stupid” things. There’s no need to narrow his focus in that way. As far as I know, the challenge confronting my family was not the result of stupid choices. Causality? A neurologist told me Joseph’s affliction, whatever it was, “just happened.” More than three decades later I still haven’t heard a better explanation.

So I wasn’t trying to dodge responsibility. But I did assume the black box of modern capability could spit out the desired remedy.

When it didn’t, I looked at other black boxes. Without going into details, I became the poster child for the errors in judgment that Fernandez ascribes to those trusting in the new magic.

On the other hand, perhaps my fixation was due less to living in our modern technological society than to stubborn refusal to accept a bad outcome for my boy. I would have grabbed any straws in sight.

adrenal gland with tumor

As I’ve noted previously, Joseph’s developmental problems have now been joined by the complications of metastatic melanoma. Black box or not, medical technology has done wonders in preserving the quality of his life since that diagnosis. I have the greatest respect for his doctor and all the other good medical people who’ve kept him going this long.

That said, he still has cancer. Also, it is now showing up on one of his adrenal glands. The adrenals sit on top of the kidneys. In this illustration, the tumor is represented by the gray blob at the top. In reality, the tumor is bleeding. The kidney, of course, is the reddish bean shape.

Looks like we could still do with some magic beans.

Precious Patterns

DLGTDT

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

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

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

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

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

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

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

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

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

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

storyline

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

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

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

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

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

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

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

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

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

What About the Flop?

No

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

bedtime

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.