On Monday, Adam Scull of Write On America interviewed me as part of his interesting series of conversations with writers across the country. I’d originally introduced myself to him as a technical writer, since (can’t deny it) tech writing accounts for the bulk of what I do with words. So I expected questions about that side of the sport. But then somehow I blew past his only reference to that, and we focused instead on memoir writing.

Please click Adam’s photo to listen. If you prefer reading, the transcript is here.

When something important in life goes wrong, it colors our reaction to later experiences.

For example, back in the late 90s I owned a bunch of stock options that had been granted by my employer. One day, to everyone’s surprise and delight, the price of that stock began a very steep and seemingly endless climb into the stratosphere. Within a few months it had made me a millionaire (on paper). But then, just as unexpectedly, the bottom fell out. By the time I understood that this wasn’t just a temporary dip, it was too late.

Therefore, a few years later when home prices in my city began emulating that stock, I resolved not to make the same mistake twice. My wife and I sold our house at the peak. Smart move? Well—maybe. The two situations weren’t entirely comparable, because we still had to reside somewhere, and I’ve never been comfortable with my living situation since then. But selling was an effort to stay in control—to be a participant at least in unfolding events, to hold onto value even at the cost of giving up something else.

I’m telling that story simply to illustrate the effect past disappointment can have on future decision making: Once bitten, twice shy. Pain avoidance motivates the most basic kind of learning.

And there is pain, and loss, to be experienced in life, often with consequences far more dire than a mere financial setback. We don’t like to think about it, but each of us is vulnerable to drastic upheavals. Look at your own life or look at the headlines over the last month. Bad stuff goes down, and no one seems able to foresee or prevent it.

The experts in whom we like to put our trust typically appear to be as surprised and helpless as anyone else.

Naturally, each of us wants to minimize pain and improve life. But in trying to control outcomes, we tend to have imperfect results (as happened when I sold the house). And here’s the idea I’m struggling to express: In view of the fragility of peace and comfort, maybe we need to revisit our priorities. Perhaps we ought to try first of all to remember and appreciate the good in what we now have—as opposed to taking that for granted while grasping for something else.

Another personal story may illustrate this. Prior to my family’s misadventures in the dot-com and housing bubbles, we had a baby with acute problems that profoundly affected his development. Something bad—nobody knew just what—had happened to him prior to and/or during birth. My memoir is the story of our uphill struggle to make things right again. Or at least to make things less bad. Typically, anything lost (health, trust, etc.) is very difficult to restore fully. Even a partial restoration is no sure thing. But we knew the cause was worthy. And the campaign we launched on Joseph’s behalf led, for a time, into some of the most intense and stimulating and even exhilarating living I have ever known. But as he progressed along the pathway toward a condition that we viewed as his birthright (wellness), the going became more difficult, for all of us, and the impact on Judy and me became impossible to ignore. There came a point beyond which it made no sense to continue sacrificing assets we had in pursuit of something we might never achieve.

There may be differences of opinion as to just where that point was—but we crossed it. At speed.

I believe Judy’s death was one consequence.

Even so, despite knowing that we crossed it, and knowing what was lost when we did, I remain susceptible to temptations that could put our family on the same course once again. I must be careful.

Sometimes, having anything good at all seems almost miraculous. I hope this doesn’t sound like a platitude. The mindfulness I’m thinking about involves renewed commitment every day to maintain, yes, even defend, blessings that we will most certainly miss if we no longer have them. Examples of this overlooked maintenance might include:

• Getting exercise and enough sleep, managing stress, eating properly, etc.
• Using seatbelts and generally avoiding needless risks
• Following a budget, eliminating debt, reviewing financial goals
• Participating in and contributing to the community
• Seeking communion with the higher power

By the way, I write in order to understand, so this is addressed to myself as much as to anyone else. But as long as I’m writing it, allow me to wonder whether, in straining for outcomes that aren’t always realistic, we as individuals and we as a society are perhaps throwing away anything now in our possession that might be exceedingly hard to recover.

Yes, of course, aspiring for improvement is natural and good. That’s why I’ve never regretted the effort Judy and Joseph and I made to give him more options in life. This is simply an acknowledgment that common sense still applies.

It’s difficult to process news of the atrocity at the Boston Marathon, and the unspeakable malice behind it. Even worse is the fact that horrible stories come along so frequently now.

This one hit almost simultaneously with the news media’s reluctant acknowledgement of the ongoing trial of the abortionist.

Meanwhile, the country is still unbalanced by the most recent school shooting.

What’s next? Missiles from North Korea?

When I was young, everyone knew war with the Soviets could erupt at any time, and yet even that possibility (because it was only a possibility) pales next to the certainty that there will be further localized but grisly developments like the above.

Normal people recoil from these things. At least, I do. I cannot bear to read about the practices in Gosnell’s “clinic,” and I cannot imagine how people who worked there could sleep at night.

On the other hand, when I write about something, I know it’s good to be specific—to provide details, invoke the senses, to augment the reader’s experience. But nobody wants a heightened experience of that stuff. I sure don’t.

And yet accumulating events like these demand a response. I cannot hope to prevent the next expression of evil in this world, but I can examine my thinking and assumptions to see how they fit into the big picture—to evaluate whether I’m even a tiny part of the problem. Because it’s bountifully evident that the society of which I’m a part is not well. And reading about Gosnell reminds me of the position I argued during the med school admission interview described in chapter 4 of What About the Boy?.

In that long-ago interview, my questioners asked what I as a doctor would do with a hypothetical frightened teenage girl who came to me asking for an abortion. That wasn’t something I wanted to talk about. Assuming I became a physician, I did not expect to provide abortions. But when pressed I did finally say that someone determined to get one should not be denied.

For many years, I’ve believed that my failure to get into the medical school was due to that answer or at least to the way in which I expressed myself. But I say in the book that I still hold the same basic view. Because if doctors don’t provide something that a patient believes is necessary, doctors shouldn’t be surprised when patients then turn to less reliable resources—and suffer for doing so. (That story is included in the memoir to illustrate what was going on when my son’s doctors likewise declined to help him.)

My position was based on various unspoken assumptions, e.g., that, as President Clinton later put it, elective abortions should be safe, legal, and rare (rare, I guess, as amputations are rare) and that, as pro-choice people have claimed, the thing we’re talking about is just “a clump of cells.” Somehow, I never gave much thought to what was involved, nor did I imagine that the issue would lead in the direction it has.

For the first time since its publication, I feel an impulse to go back and alter something in my book. I don’t want it to convey the wrong message.

The girl asking for an abortion most definitely needs help. No doctor has any business shaming her or giving the impression that she’s being turned away. That does not mean that an abortion is the help she needs. I’ve finally reached the conclusion that my response in the interview merited the rejection I subsequently received.

Yes, abortion is legal. But it’s a stretch to call it safe, and it’s most certainly not rare. Not even for late-term abortions. In most cases, at least, it’s far outside the scope of what caregivers or humane society should countenance. I was wrong have evolved.

UPDATE: One effect of the increasing polarization in society is clarity. On a number of issues, including abortion, I previously saw merits on both sides and wanted to call myself a moderate. However, as the debate grows more heated, parties begin to show what they really mean. I find that helpful.

This TV news segment was filmed outside our house in November 1988. Joseph was 44 months old. Thanks to an intensive home program, he had taken his first independent steps in June of that year.

I mention this interview on page 247 of What About the Boy? I thought it would be good to see again in honor of his upcoming birthday. Click the image to view it.

The next time this story is enacted, it may be in a cinema near you. A screenplay has been written, a producer has said he wants to take on the project, and the next step is financing. To see the producer’s synopsis, click here and then click the image of the book cover. The project is mentioned on page 2 of a press release you can read here.

If you have not yet read WATB, please click over to Amazon from the link on this page and begin getting acquainted with Joseph. He may surprise you.

Last year, a reviewer of What About the Boy? observed that the story is in the tradition of the “reluctant hero.” I wasn’t familiar with that term. I felt vaguely uncomfortable with the suggestion that my deeds or motives in trying to help my son were being seen as heroic. The alternative (not trying to help him) had been unthinkable, and so (along with my wife Judy) I simply did what had to be done. Surely, that merits no special credit. But perhaps my uneasiness with the word lies in concepts absorbed from the general culture.

The traditional image of a hero originated with the ancients, who created semi-divine figures like Hercules, famed for subduing monsters and otherwise rising to challenges beyond the capacity of ordinary mortals. Some modern figures are in the same tradition. Thus we have Superman (“faster than a speeding bullet,” etc.), as well as quasi-super characters such as Rambo or those for whom success is never very much in doubt (Indiana Jones, James Bond, et al.). In short, these guys are tough, fearless, clever, confident, and probably good-looking to boot. They’re also not particularly realistic (at least, not outside elite special-ops units in the military).

Their tales may be entertaining, but don’t intersect with life as I’ve known it.

I began writing What About the Boy? when I realized that my family’s situation was not unique, and that many families with developmentally disabled kids were, like us, moving heaven and earth in all-out attempts to improve their children’s options. In writing, I was simply putting a face on the experience of a chunk of the population that was and remains far too sizable.

OK, so what heroes are realistic, or recognizable? Actually, these exist in our culture as well. Examples in recent movies would include:

• Frodo, in the Lord of the Rings trilogy
• Billy Bean, manager of an underdog baseball team in Moneyball
• Vincent Freeman in Gattaca
• My favorite, Wei Minzhi, the 13-year-old substitute teacher in Not One Less

These are people who wrestle with personal weaknesses, doubts, or shortcomings. They have no special gifts, other than an understanding of what they must do if they are to live with themselves. They all face moments at which the easier course, by far, would be to admit defeat.

• Who could forget Frodo’s agonized expression as he acknowledges that no one else can accept the unwelcome task given to him? Despite the astonishing visual effects and pageantry of this saga, its strongest aspect is a message that staying the course costs Frodo almost more than he can bear.
• Billy still relives the points at which his life went off the rails, and responsibility for a losing team opens old wounds. The effort to save the team is powered by his undimmed determination to make things right–for himself and indeed for others like him who have ended up on the margins. But this means ignoring conventional wisdom, infuriating his colleagues, and taking a huge personal risk.
• Because of his genetic makeup, Vincent is expected to accept a menial job and second-class status. By far, that would be the easier course for him. But by an act of sustained willpower, he overcomes that limitation and proves that by golly he does control his own destiny.
• Unwilling to lose even a single student from her rural Chinese school, Wei Minzhi sets out on an odyssey to the city to rescue a runaway 10-year-old boy and bring him home. Every step of the way leads to a new obstacle, but incredibly, she never considers giving up

I like these stories, but each of them reaches an uplifting conclusion within a reasonable time frame. In life, things can remain more problematic. We can choose to do the right thing, confront personal demons, make sacrifices, and still not see the hoped-for reward. Or we can achieve enough to know that we’ve made a good choice but still not enough to claim victory. The struggle goes on.

I think the struggle goes on throughout life. I think this is a large part of what life is all about. That being the case, everyone who shoulders a burden that really cannot be ignored—as opposed to running away from it—is a hero. A reluctant hero, perhaps. I guess this is why we identify with stories that define this problem.

The interviewer’s focus in this discussion remained pretty close to the “lost, isolated and helpless” theme in her write-up. Listening through it afterwards, I wondered if perhaps she wanted more acknowledgment from me that such is the fate of people trying to raise disabled kids.

Readers of What About the Boy know that I don’t minimize the reality and effect of strong emotions. However, my view is that the value of anything said about this depends in large measure on finding a way not to feel lost, isolated, and helpless, and instead to feel empowered to bring about positive change – or at least to remain undefeated in spirit. It seems the answers I offered to her questions restated that point in various ways.

As I’ve written in other posts, everyone seems to encounter hardship, disappointment, injustice, etc. Some folks do have easier lives than others, but there’s no point or future in anyone arguing that they’ve been given a worse deal than someone else. When you take that path, you’re in danger of nurturing that sense of unfairness. I don’t think it’s constructive to direct your energies away from the neverending process of living victoriously.

Please click the above image to hear the audio. Click here to read the transcript. As always, comments are welcome.

“And are you a writer?”

This polite question was asked of my wife years ago, when I introduced her to my professor at a party. That professor’s byline frequently appeared under stories in The New Yorker, her first (of many) novels was coming out, and since the party was for her creative writing class, practically everyone around us aspired to similar success.

As it turns out, Judy did not write. But she had a ready comeback.

“No,” she said. “I’m a reader.”

Where indeed would writers be without readers?

The point is often made that a writer must also read—preferably in many genres—in order to stay up to speed with what others are doing. To some extent, the way a story is put together or the way language is used in it is a response to that context—not a final answer, of course, but one more statement in an ongoing conversation. That’s why, in my own first encounter with the above professor, she’d asked what authors I was reading. I mentioned Gogol and Tolstoy, but she shook her head impatiently. “Are you familiar with any current authors?” she asked.

“Well,” I said slowly, “I’m also partway into something called The Death of the Novel.” I named that one reluctantly, because it was very weird. I didn’t know how she’d react.

Actually, she liked that answer much better. “Ronald Sukenick is about as contemporary as you could get!” she said happily. (This was in the mid-70s. Thus far I wouldn’t say that Sukenick’s work has withstood the test of time as well as those others. I could go further and say his kind of experimentation was not the sort of thing newbie writers such as myself needed to be emulating, right out of the gate. Nevertheless, writers have to venture beyond the classics, and indeed beyond whatever material they find most comfortable. The more we stretch, the more we learn.)

A book like Sukenick’s is probably intended specifically for other writers. Most books are not. A reader of a book like What About the Boy? may pick it up as casually as any other small purchase, and will most certainly put it down again if it fails to connect. Such readers represent the true test of a book’s worth. Imagine the gratification I experience when a reader feels moved to contact me out of the blue—as when a woman in Atlanta wrote to say that WATB had spoken to her, even though she had no children of her own. Likewise, I was thrilled to receive a phone call one evening from the daughter of a deceased author, who’d written a memoir somewhat like mine many years ago.

On the other hand, thus far, few contemporary writers known to me have read WATB. (At least, they’ve had little to say about it.) Perhaps they think its focus on disability removes it from the body of works that constitute contemporary literature (those dealing with romance, murder, war, betrayal, globetrotting, growing up, etc.). Or perhaps the notion that it belongs is my own conceit. Determinations like that occur on a plane beyond my understanding.

In my view, writers and readers alike exist in a loosely connected community. We communicate with what we say and don’t say. In writing my memoir, in reviewing the works of others, in responding to occasional requests for private critiques, and in taking questions on call-in radio shows, I hope to contribute value to this community.

As always, feedback on that is very welcome.

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.

Henry Ford, the entrepreneur who showed a younger world how to get things done in a big way, has been credited with this gem of wisdom: “If you think you can do a thing or think you can’t do a thing, you’re right.”

I was reminded of that today when writing a short remembrance of another pioneer, Ray Bradbury. The story in WATB, and my ongoing ruminations about what it means, amount to an exploration of the limits of what we can do.

Here are more nuggets from Mr. Ford, and my current thoughts on their application:

“Time and money spent in helping men to do more for themselves is far better than mere giving.”

To me, this is a variation on what Glenn Doman said back in 1986: that the right objective for Joseph was that he be “an answer to the world’s problems, rather than another of its problems.” I understand that some disability and diversity advocates see things a little differently. My short answer to them is that it boils down to having options. Someone who has the choice of affecting the world around him is better off than someone who depends on that world for everything that happens. Assuming he makes wise choices, other people are better off as well.

“I cannot discover that anyone knows enough to say definitely what is and what is not possible.”

When Joseph was one year old, his doctors transitioned from telling us to be patient and hope for the best into telling us to get counseling, so that we could cope with the fact that nothing could be done for him. At least, they proposed doing nothing for him, and they warned us to stay away from any alternative providers who might have a different take on the situation.

Those doctors lost all credibility in our eyes when alternative providers did in fact help him.

Did the alternatives have all the answers we needed? No. Were they as smart as they seemed to think they were? Alas, they were not. This was doubly disturbing, since they claimed as adamantly as had the original doctors that no answers existed outside their own specific realm. Again, we were advised not to look elsewhere.

If we had been less motivated and more convinced that we were getting the complete picture, we might have reacted differently. But when you have a problem that you feel absolutely must be solved, and the known resources for solving it no longer inspire confidence, something happens in your head. At least, something happened in our family. We set out on a quest for answers with no guidance beyond what felt right.

Were we smart enough to do that? Probably not. But we didn’t want to give up without establishing for ourselves the potential of every plausible course of action. I cannot regret our choices.

“There is joy in work. There is no happiness except in the realization that we have accomplished something.”

When I’m asked to talk about WATB, a point I always try to make is that, despite having a child with profound developmental problems, and despite being busier than we’d ever been in our lives, Judy and I spent a great deal of the time feeling extremely happy. Optimism reigned in our household. Volunteers who came to see us felt energized, and no doubt that was the reason many of them kept coming. We believed fervently in the rightness of what we were doing. We saw evidence in our son that reinforced that belief. Those days were an extraordinarily upbeat time in our family’s life, and I look back on them with wonder.

“Thinking is the hardest work there is, which is probably the reason why so few engage in it.”

It isn’t easy to think clearly when in the thick of battle. Also, one’s thinking is only as good as one’s knowledge, and throughout the story I tell knowledge was never in great supply. We started off with basic instincts and notions of right and wrong, and that arsenal was what informed a lot of the decisions made along the way.

But the writer writes to teach himself, and a lot of my deeper thinking on the subject of our campaign took place as I was putting my book together. So far, this thinking hasn’t particularly benefitted Joseph. It has, however, enabled me to bring new understanding to his extraordinary childhood and current status. Further revelations continue to take shape as I blog about the story. This is not a linear process. Time passes with no new insights. But then something clicks and my understanding acquires new depth.

This latter phase was optional. The story could have ended without my ever having digested or told it. I have benefitted personally from going back over it. My hope is that readers following the thinking that it dramatizes will see things anew in their own lives as well.

“Failure is only the opportunity to begin again, this time more intelligently.”

From a practical standpoint, the first motorized quadicycle Henry Ford built wasn’t much of a vehicle. The first car company he put together didn’t exactly work out for him, either. The same can be said for the first several attempts Judy and I made to help Joseph. We took our son to doctors and therapists who, quite frankly, had other priorities that prevented them from giving his case the kind of attention it needed. We saw other providers whose frame of reference was too narrow, if not altogether wrong.

Every time a resource disappointed us, we looked for another. We looked to ourselves, as well, because early on it became obvious that nothing was going to happen that did not involve major effort on our part.

Several milestones and several plateaus later, to use automotive metaphors, we ran out of gas. We reached the end of the road. If further progress for Joseph is yet possible, the route it will take has not yet been surveyed.

However, my pledge to my son, alluded to in the book’s subtitle, is that I remain poised to resume the effort when a new course of action looks promising. I will do so armed with everything learned along the way. The result might yet be an answer to the world’s problems.

Complete this puzzle correctly (per my answers) and send it as an email attachment to kidsbright at gmail dot com to get an ebook of What About the Boy? in either Kindle or Nook format, or as a .pdf file (your choice). A degree in English is not necessary, although having read a bunch of books would surely help.

(I admit that a tighter format, like they have in newspapers, would have been more attractive and perhaps less ambiguous. Also wish it were easier to generate something you could complete and submit online. However, I’m new at puzzle making, and this is the best I could do in the time available.)

Just click the image below to open and then send to your printer.

Across	Down
2. Bestseller about circus life	1. Sci-fi writer knighted by the Queen
5. Setting for some Burroughs tales	3. Utopian novel with anagram title
6. Whitman said, “I celebrate ______”	4. King with a daughter problem
10. Nadsat slang for “good”	7. Still waiting for this guy
11. Sports writer, lost a daughter to CF	8. Pondered a road not taken
16. ____ Kampf	9. Translated by a committee
17. He wrote Westerns	12. Writes legal thrillers
19. Not as desirable a name as Ernest	13. “Ode on a Grecian ___”
20. The ___ Sleep	14. Bad guy in Othello
22. Requested for Algernon	15. Many poems have this
25. A modern confessional genre	18. “A single man in possession of a good fortune must be in want of a ____”
26. “The past is not dead. It is not even ____.”	21. “All happy families are _____”
27. Dog who traveled around the U.S. with his master	22. Iconic horror story penned by the wife of a poet
29. Lysistrata led the women on ______	23. Wells’ meek folk of the future
30. He set his novel in Macondo	24. Hemingway’s old man
31. Worn by a troublesome cat	28. The cruelest month
33. “It was the age of wisdom, it was the age of ______”	29. What Atlas might do
35. A story needs this	32. “Stately, ___ Buck Mulligan”
36. Had a dragon tattoo	34. Wolfe’s astronauts had the right _____
38. Dwelt by a pond	37. Whale hunter
41. A lonely hunter	39. Premier authority of English language
43. Went down the river with Huck	40. Nevermore will he write
44. Was read (for a time) in Tehran	42. Rabbit did this
45. Wrote a haiku in the metro