The first anniversary of What About the Boy’s publication occurs at a time when voters in my country are preparing to make a big decision. It’s no secret to anyone who knows me that I can bear to think about only one of the likely outcomes. And yet, as I encounter the same tired talking points being hurled back and forth every day, by people impervious to ideas other than the ones they’ve already accepted, it seems that discussion has stopped being productive.

I’m not really talking about national politics or any particular issue, because other controversies can follow the same template. Just to pick an example, at the height of the vaccine debate, opposing sides had ceased talking to each other in favor of connecting with uninformed people and convincing them that the other side was dangerous. (OK, fair disclosure: I participated in that scuffle.) And I’ve seen coworkers—highly skilled, presumably intelligent professionals—disagree so fervently that the encounter more closely resembled a dogfight than a rational exchange of views. Bystanders intruded at their own risk.

Given so much discord, is it possible to back up and find universal agreement on anything?

Probably there’d be no objection from any side to this claim:

Things are not as they should be.

Naturally, saying this implies that we know how things should be, although disagreement resumes the minute anyone proposes a fix.

On the plane of existence where we mere mortals operate, I see approximately three alternative responses:

• We can trust that somebody (possibly we ourselves) has answers that will make things right (or at least better). Everybody else just needs to be persuaded or otherwise brought into line until that remedy takes hold.
• We can observe that most human effort is wheel-spinning that accomplishes little more than elevating one’s blood pressure. Unfortunately, if nothing can be accomplished, that leaves only depression or at best fatalism.
• We can acknowledge that things are not only in a mess but are likely to remain that way, and conclude that the only defense is to carve out as nice a niche, for ourselves and our loved ones, as is possible, and take consolation there.

(There may be a Master Plan, in the context of which all this chaos makes sense, perhaps beautifully. I’m inclined to believe that Plan exists. But the focus here is on our current sphere of reference.)

I hadn’t thought of it in these terms before, but all the above scenarios play out in WATB.

Following Joseph’s birth, things most certainly were not as they should have been!

Judy and I believed with all our hearts that somebody would know how to improve the situation, and would be motivated to do so. When we found likely heroes, we gave them our allegiance and trust. And in all honesty, decades later I cannot bring myself to say that we were wrong. Judy went so far as to encourage others to do likewise. Sometimes, the resistance she encountered astonished her.

Joseph’s condition improved—but after extraordinary effort, things were still far from right. We fell so far short of the hoped-for result that Judy simply could not accept what had happened.

Picking up the pieces (with much guidance from Song Yi), I eventually created a nurturing little haven that remains the home base for Joseph as well as his younger siblings. There is indeed a deep consolation in these latter-day developments. I celebrate some of them on my personal Facebook page.

But the original problem has never been resolved, or even adequately addressed. Apparently, no one knows how to do that.

OK, so things tend not to work out so well. Still, each of us does make a difference, in everything we do. It was my hope in writing WATB that a frank portrayal of my family’s experience would add something to the question of how adversity might be handled (or in keeping with the metaphor in the book, how a maze ought or ought not be negotiated).

I also hope that I’ve reflected accurately on our interactions with other people and have portrayed them fairly.

Some of the people in this story disappointed me. Disappointment was in direct proportion either to my justification in expecting something from them or to the extravagance of their unfulfilled promises. Also, there were a few low-lifes who took advantage of our desperation for their personal gain. On the other hand, I owe boundless gratitude to so many people who could offer nothing more than friendship, a helping hand, and the benefit of their own perspective. Without them, none of us would have survived.

WATB supports the conclusion that entrenched positions can lead to ruin. In other words, we do need to continue talking to one another—and listening. All of us, myself included.

Several weeks ago, I learned about a little book that is the product of a collaboration between a developmentally disabled teenager and his mother. He contributed several arresting illustrations, and she added written context. I ordered a copy and suggest that you consider doing so as well.

This book provides touching insight into the perspective of Wolf, the young man, as interpreted by the person who comes closest to understanding him. She explains that the things we find important do not register with her son. For example, he has no interest in the authority, social status, or mood of another person, or in passing the time with “small talk.” Instead, he cares about animals, Bigfoot, ghosts, life on other planets, and meteor showers, or as he puts it, “realistic things.”

While I think anyone would welcome the opportunity to consider another perspective, this particularly fascinates me because I’ve spent so many years wondering how my own son, Joseph, sees the world. Unfortunately, in our case we don’t have the avenues of artwork or verbal language. If I know what’s going on in Joseph’s head, it’s only because of clues like his facial expression. He can convey a lot that way, but a very big gap remains for a dad who relies on words as heavily as I do. The situation feels somewhat like the one in the movie Mr. Holland’s Opus, in which the music-loving father must come to terms with the fact that his son is deaf.

For a while, Wolf was drawing disturbing images because, he said, he needed to get it out of his head. His mom connected that preoccupation with the influence of “reality bullies” who believed he needed to spend his time in school. He had concluded by that point that school was a place where “I felt sick in my body and sick in my head.” She advocated for him, as of course a parent must, and won his release. After that, “his artwork was no longer plagued by disasters.”

“The older Wolf got,” the mother tells us, “the more pressure the world put on him to normalize … and it just wasn’t happening.”

I know all too well the feeling of having something not happen. I hesitate to use the word “pressure,” because it sounds so negative. I continue to think that trying to help a child “normalize” is a fundamentally good thing. Nevertheless, in so many cases we make our best efforts (granted, with mistakes along the way). We put our trust in those whom we believe merit that trust. We couple our efforts with theirs. And, as another parent of a disabled kid puts it, that pursuit turns into “a fool’s errand.” It can make the parents crazy with frustration, let alone the child.

How do things end up going so wrong?

I do maintain that something is going wrong here. There is no question that, from any objective measure, including degree of control over his own circumstances, Joseph’s quality of life leaves a lot to be desired. And Wolf’s mom says up front that he “deals with chronic discomfort and confusion” that are due to his condition. It’s entirely reasonable for anyone to want to relieve a child of such problems. These are problems.

What are we to make of this? It’s the question I’ve had the most trouble with, over the years, and the one that other people seem to have the hardest time answering as well. All I can say is that a problem that cannot be resolved to our satisfaction is a problem we must make the best of. We must live with it, and we owe it to ourselves and to everyone around us to make life as good as it can be.

Wolf the Artist provides a fine example of a family doing just that. Please check it out.

At an earlier stage in life, I underlined key passages in everything I read. Didn’t matter if it was a textbook on histology or a play by Shakespeare. I wanted to find the kernel of usable truth in there—the basic idea or fact that could make a difference in how things turned out for me.

In the case of a textbook, read in preparation for a looming exam, the rationale for this is obvious. But often I had a longer view. I assumed that most of what I read might have long-term relevance. I didn’t expect to have time to read the whole book more than once, so I wanted to leave markers to enable my future self to return and quickly find the takeaway among all those less important words.

Then, having extracted the essence from many books, presumably it would be no insurmountable task to assemble all those snippets, look for commonality or some kind of synthesis, and be able to say with some finality This much is true.

And then, of course, to be more enlightened, or more effective—more in sync with the great minds that had gone before. (The notion feels slightly sophomoric at this point.)

I’m reminded of that long-dormant impulse by the advice I hear nowadays, as a blogger, to populate my writing with keywords and bullet points. The idea is to make information easily accessible by web surfers and search engines alike.

I don’t seem to be doing a very good job of that here.

Now, in my day-job as a technical writer, I do know I’m supposed to provide just enough information for my readers to act upon. For example, someone reading the user guide for a new mobile phone has a specific purpose and doesn’t want to spend a whole lot of time accomplishing that purpose. Nobody does. They have too many other things to do.

But let’s say someone needs to get to the bottom of a controversial question, of which there are many in life. In my family’s story, when our baby had a developmental problem, we wanted answers and we wanted them yesterday. Time was passing, and the other kids were leaving him far behind. Doctors told us there was nothing anyone could do for him. But alternative provider A assured us that he could help. Alternative provider B warned us to pay no attention to A and to trust him instead.

We all want life to be simpler. We want to absorb a succinct message and have it be sufficient.

So in a situation like my family’s, eagerness to find a quick answer may drive us to uncritical acceptance of the wrong one. Human nature being what it is, deciding that one option is best can result in a rigidity that prevents us from reevaluating when new information comes along. The trouble is that the discarded choice may be less wrong than it is incomplete. In our story, the mainstream doctors had a valid point—but so did some of the alternatives. By ignoring the pediatrician’s advice, we did improve our son’s quality of life. On the other hand, we could not completely overcome his problems, and in the process of trying we damaged ourselves. The mainstream doctors had warned that we needed to look after ourselves as well as our son, and it turned out they were right about that.

It’s a challenge, distilling my experiences down to a handful of pithy truths. I hope that people can avoid some of the mistakes we made along the way, but to do so they probably need to travel some of that road with us, at least vicariously, on the page.