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.

Inevitability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Que sera sera

Unpacking my heart with words

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

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

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

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

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

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

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

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

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

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

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

All things are possible, except when they aren’t

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

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

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

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

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

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

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

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

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

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

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

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

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.