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.

Legislative bodies seem to enjoy designating this or that day, week, or month as a time for everyone to acknowledge the importance some worthy cause. To me, those proclamations generally seem like pointless exercises and a distraction from the things elected representatives ought to be doing. For example, I like plumbers as much as anybody, but who really cares if March 11 is World Plumbing Day?

National School Lunch Week, Great Outdoors Month, and their like come and go without affecting me in the slightest.

However, April, that cruellest of months, happens to have been set aside for commemorating two issues that have had devastating effects on my family and a great many others.

National Autism Awareness Month

A new study from the CDC tells us that the autism rate in the U.S. is now 1 in 50. That’s 80,000 kids each year. The population of, say, Gary, Indiana. Every year. And since boys with autism outnumber girls by a ratio of 4 or 5 to 1, slightly more than 3 percent of all American boys have an autism spectrum diagnosis.

With numbers like that, it’s entirely appropriate to call for us as a society to recommit to dealing with the crisis.

What we really want, of course, is visible progress toward (1) an understanding of the real causes, (2) effective treatments, and (3) prevention. Over the years, I’ve read a lot of articles and have attended a lot of presentations that gave the impression that we were further along the road toward those goals than we really are.

To the extent that progress is influenced by outlays of government money for research, perhaps legislative bodies might hasten things along. We can agitate for them to try, and many of us do, but I believe the people controlling the purse strings will always have other priorities.

Aside from that, the only option I can think of is to be aware. Those of us with children in our future ought to know as much as possible about the risk factors and early warning signs. (Lists of either are beyond the scope of this piece, but to pick an example here’s a rather scary item you might want to read.) I disagree with those who go out of their way to avoid scaring people, when fear could provide motivation to do something constructive.

Everyone contemplating having children should understand that screening and early intervention is key to improved outcomes for kids with developmental problems. Regardless of what your pediatrician may try to tell you.

And those of us as yet untouched by all this can endeavor to be understanding and patient when we inevitably encounter it in public.

Cancer Control Month

Cancer is the second most common cause of death in the U.S., exceeded only by heart disease. One out of every four deaths in the U.S. results from cancer. By my figures, that’s 625,000 people dying each year, some still young. The population of Boston, every year. Screening and therapies have improved over time, of course, and lots of people diagnosed with cancer do not die from it. Still, the number of new cases is increasing. As with autism, there’s an urgent need for continuing research, aimed at finding real-world solutions, and for awareness. As with autism, the reality of a diagnosis may be closer than any of us thinks.

Again with the scare tactics. Forgive me. Normal human thinking seems to involve an optimism bias. That is, we know bad things happen to other people in situations like ours, but we tend to believe they won’t happen to us. However, learning a little about those bad things might prepare us for making wise choices.

There doesn’t appear to be one single cause for either of these threats. Genetics is evidently involved in both, or more likely there’s an interaction between genes and circumstances. Looking at my own family, I see a few risk factors for both autism and cancer. (There’s some overlap.) But no doubt other families manage to get by just fine with the same cocktail of hazards. My family also made conscious decisions to reduce our risk—unsuccessfully, as it turned out.

These are very complicated subjects, and it’s not surprising that confusion still reigns. (I do think we’ve got it in us to do a little better.) I guess, if the government can’t pay for a resolution, their calling attention to the crises is at least a nice gesture.

TS Eliot’s poem The Waste Land notes that April is the time when our world should be regenerating after a long winter. In the poem, that renewal brings pain, because it suggests a more carefree time in the past. For me, and for a great many others, fresh spring air evokes memories of a time before autism (or something like it) took my first child and cancer took my first wife.

Now, my daughter (a perfect representation of new hope in my own life story) reminds me that I shouldn’t end this with such a defeatist note. Given that we do live with the threat of these things, and sometimes more than a threat, we also need reminders that there may yet be profound joy on the other side of loss. In that spirit, here’s the concluding scene of The Joy Luck Club, which is often in my mind. Just click the image below.

Hat tip to Talk About Curing Autism for the graph above.

An edited version of this article appeared in The San Diego Reader.

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.

Please don’t misunderstand. I’ve always thought the space program was a great thing. I watched TV coverage of America’s first manned space launch with my fourth-grade class, saw the Moon landing with high school friends, and as an adult worked many years supporting unmanned launches from Cape Canaveral. Over time, this effort has resulted in dramatic changes in the way we all live that are now taken for granted (e.g., satellite TV). It has often prompted a shared sense of pride and community. And the demonstration of sheer brainpower is impressive for its own sake.

But here’s a question that has bothered me for years.

Since we, as a society, can do what is depicted in this astonishing video (please do click the image and watch it), and since similar massive efforts are also deemed necessary to understand the causes of anomalies and mishaps such as airplane crashes…

Is it unreasonable to expect the same level of smarts to be deployed, with the same sustained focus, in the cause of improving our response to developmental disability?

When my son Joseph was born in 1985, I naively but naturally expected to see that happen. Then, as his mom and I began pursuing leads in hopes of finding the answers he needed, I realized how very many other families were grappling with the same problem. Generally, they did so with no help from the acknowledged experts.

Important work is being done, here and there. I know a highly motivated researcher at George Washington University, who tells me much of her time is spent trying to secure funding for continued work. Last year I wrote about attending the very stimulating “Frontiers in Neural Disorders” conference in San Diego. The speakers had interesting things to say, but I perceived no sense of urgency. Occasionally an upbeat report appears in the news. But actual breakthroughs–the sort of thing that would give people like Joseph additional options in life–appear to be generations away.

We as a society all suffer as a result. Just saying.

Unpleasant films

There’ve been times in my life when I imagined myself sort of a medical geek, but I doubt anybody wants to see images like this when a family member is involved. I didn’t. When our little boy was one week old, the doctor showed some films to his mom and me, and provided a summary of what they could mean, thereby transforming our joy of parenthood into an agony of fear, horror, and suspense. His scans were unusual but not necessarily significant, according to the doctor, and so we resolved to hope for the best. When things subsequently began to turn out badly, however, those films provided a convenient excuse for doctors to shrug and move on to the next patient. All this technology can be a wonderful thing, but it was not helpful in our case. That’s particularly true in retrospect. Joseph’s brain has been scanned several times over the years, and every doctor who has seen the films has had a different opinion. At this point, however, the verdict seems to be that they show nothing out of the ordinary at all.

Books to guide and encourage grownups

Imagine you’re a clueless new parent coming to terms with the realization that your child may have developmental problems. Imagine further the loneliness you may feel after consulting professionals who aren’t prepared to do much to remedy those problems: The child’s future is entirely in your hands. His needs may be urgent, but they’re a mystery, even to the experts. What do you know? This was the point at which Judy and I began trying to educate ourselves in hopes of improving things on our own. There are scenes in the print and (hopefully upcoming) film versions of What About the Boy? that show how our thwarted energy found direction when we discovered a new book—and there were far more such books than I wrote about. First there was a maverick provider’s manifesto with the promise that better answers were available. Then there were parents like us telling how those answers worked for them. Later, there were other providers with other ideas, and other parents–and even one or two recovered patients—weighing in on how it all shook out for them. We cherished these stories because they filled a void, albeit imperfectly. Years later, WATB became my contribution to the literature.

Daily scorecard

When we started a neurological stimulation program for Joseph, based on directions given by an organization back East (the Institutes), we had an assignment to perform various tasks with him throughout the day. That assignment changed, and generally became more complicated and demanding, each time we returned for a reevaluation. I made checkoff sheets for each day, to help us stay on track, and this is an example. It looks like some of the items on this day’s list weren’t accomplished, which is not surprising. It was a rare day indeed on which we met every goal. At this particular point in Joseph’s trajectory, the top priority was to get him walking. This was probably a “marathon” day for walks back and forth under his overhead ladder (OHL), and apparently he slightly surpassed that target (at the expense of meeting others).

Reflex mask (aka “kiddie space mask”)

Little kids and plastic bags do not mix. That’s a given. But this is one example of various specially designed masks that were provided by the Institutes to parents of developmentally disabled kids. According to the Institutes (and some organizations they dismissed as imitators), the crux of each kid’s problem was inadequate breathing. Fix the breathing and within a matter of months the kid too might be fixed. Accordingly, while on program with the Institutes, we lived with a continuously-running seven-minute timer. When it beeped, we popped a mask such as this over our son’s mouth and nose for a one-minute duration. During that minute, the air he breathed had to be drawn in through that little straw in the end. He responded by breathing more deeply. (I still remember the surprise I felt at seeing an immobile kid puffing as if he’d just finished a sprint. Of course, getting to the point of actually being able to sprint would be better, and was one of the long-range program objectives.) Also, because he also inhaled a greater concentration of carbon dioxide while wearing the mask, changes occurred in his body that increased the blood flow to his brain. We saw reasons to believe that masking helped Joseph on a physiological level. Naturally, this paragraph does not constitute medical advice and is not intended as such.

Homemade intelligence materials

“I just wish it were as easy to make a paralyzed kid walk as it is to make a brain-injured kid bright.” So said Glenn Doman when encouraging families on the program to go home and work hard to teach their kids about the world. Many reasons were given for doing this. Learning to read, learning to do mental math, learning about related subjects (breeds of dogs, flags of countries, famous people, or in this example WWII airplanes)–these activities would be fun, for parent and kid alike. Success would be easily achieved, and would therefore motivate efforts in other endeavors. And, yes, along the way the kid would become a lot smarter. We made all these materials in our spare time (ha ha; that means times when normal people were sleeping), and I hope it’s evident from this that we shot for maximum quality. There were moments when Joseph rewarded our efforts. But usually he was not much given to providing feedback.

The corner bar (not what it sounds like)

WATB includes a photo of Joseph walking beneath his overhead ladder. What we see here was a precursor to that. (I called it “Joe’s Bar.”) The first objective was to get him to grip an overhead dowel in order to stand up straight, and you can see the poor guy looks a little fearful at this point. Later, he learned to reach from one dowel to another, walking as he did so. And finally, at long last, he walked out from under the contraption with no assistance. We had him walking back and forth under the ladder for more than a year, but finally (at 39 months of age) Joseph became an independent walker. It was his clearest and most dramatic victory, and he was quite obviously proud of himself.

Travel docs

In Joseph’s early years our family did not take vacations. However, we traveled quite a lot. We flew from our home in San Diego to the Institutes in Philadelphia nine times over a period of four years. We made innumerable day-trips to clinics in places like LA and Phoenix. And after moving on from the Institutes’ program, we ventured abroad, always hoping to find someone who knew more than the last resource. It’s easy to look back at all that chasing about and see desperation, but everything we did made perfect sense (to us) at the time. In the process, I very slowly learned the importance of weighing the objective likelihood of success against the cost. Consequently, it’s been easier to pass up more recent opportunities to do the same thing. On the other hand, I’m still glad to have had the opportunity to try everything, and find out for myself that it didn’t work. (Say, Edison said something along those lines.)

Articles of faith

The campaign to help our son was always an uphill struggle, but we experienced exciting victories along the way, and spotted little clues suggesting that still greater breakthroughs could be within reach. So we always believed success was possible. We also believed beyond any shadow of a doubt that success, i.e., total wellness, was his birthright. The challenge was simply finding the best path for attaining it. When our own efforts proved insufficient, we gradually began to think we needed a more spiritual approach. We were very ignorant of such matters, but highly motivated to learn. Accordingly, we started out in a quasi-New Age church that was very much into something called affirmations, i.e., calling things that be not as though they are, with the intent of summoning them into being. Growing dissatisfied with that, we found a movement that seemed more Bible-based and therefore hopefully closer to the source. (For example, the four steps suggested in the image to the left are derived from Mark 5:25-34.) Because of this endeavor, Joseph spent a fair amount of time when he was five and six years old in huge religious conventions and healing services. And his mom and I subsequently spent time coming to terms with the fact that we were either abject failures at this or else were still getting bad instruction. Still, hope is a wonderful thing, and we found some here.

School paperwork

Before becoming a parent, Judy worked in special education. Perhaps for that reason, she knew, very early on, that she did not want educators involved in the decisions to be made regarding our little guy. A couple ladies from the school system came to the house to assess his condition and recommend some sort of special-ed preschool placement. She was not interested. She felt sure they offered nothing that would improve Joseph’s abilities. And so we carried on without any such help until he was seven years old. The time came, however, when he did have to enter the system. That’s when I began learning about what we’d been missing. Over the next several years I accumulated boxes full of IEP reports and correspondence such as the letter shown to the left. (Click the image if you want read the first page, but I’m pointing out that once again the school is not following through with the actions they had agreed in writing to do. In this case, the issue was providing a device that might help Joseph communicate. It’s the identical problem dramatized in Robert Rummel-Hudson’s fine memoir, Schuyler’s Monster.) I hate to look in those boxes. Educators who read this will surely be indignant, but all this documentation bespeaks a staggering waste of public resources and human life.

Bumble ball

No recap of objects in Joseph’s early years would be complete without at least a nod to those he personally appreciated. He had no shortage of toys, including myriad stuffed animals that well-wishers gave him (alas, he never connected with such things) and so-called educational toys of one sort or another (again, little interest). Thinking back over those days, I believe the one thing he most enjoyed may have been this ball that vibrated and randomly bounced all over the place. Turning it on guaranteed a radiant smile from our little guy, which meant a lot to us adults. (This image comes from Amazon, where apparently it’s now more successful as a toy for pets. Parent reviewers complain about the quality. Maybe this isn’t exactly the same product, but something very similar was a big hit in our house.) All choices Judy and I made were motivated by the desire to maximize his options in life, and yet in the end it all boils down to being happy. Helping a child to be happy is good.

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.

Last year I posted a list of the most interesting new books I’d read during 2011. With one or two exceptions, I focused that time on brand-new works by unknown writers. Many such writers continue to deserve every break they (we) can get. However, I’ve also been reading plenty of authors who are well-established or even famous. Usually, doing so reveals the reasons for their success, and that’s instructive. Therefore, my list for 2012 includes several who need no introduction as well as a few who’ve yet to be noticed (and with less concern for the date of publication). For expanded reviews, click the titles.

By the way, just a reminder: Books make excellent gifts.

Patrimony, Philip Roth

The big news about Roth is his recent decision to write no more. Fortunately, he has produced more than enough edifying prose to keep readers busy well into the future. I worried that this memoir about his father’s declining years might be depressing. (Some readers have been hesitant about tackling my story for the same reason.) But in life, trouble comes to us all, and the interesting thing is the human response–whether it makes sense, whether the people responding are recognizable, whether there’s a takeaway. For me, the takeaway of Patrimony is that despite all the suffering involved, death and loss can be endured and more than endured. In a way, they can even be a way of defining and appreciating life.

Oxygen, Carol Cassela

Because of my background I’m a sucker for both nonfiction and fiction on the subject of medicine. That goes double when a disabled child is involved. But aside from this novel’s specific appeal to me, it should make good reading for anyone. The writing is exceptionally good. The dialog is perfect.

Our Lady of the Forest, David Guterson

This story revolves around a character who is a vital presence at the outset, with disturbing memories, and then, as she is seen more and more from the perspective of others, gradually becomes objectified. When Guterson’s characters speak, the dialog is wonderful. Our Lady should be read aloud. The story should be enacted. To me, it feels almost more real than actual life.

Replica, Lexi Revellian

This novel gets an A+ for convincing characters and dialog and–especially appreciated–for a wonderfully unique story idea (to which I cannot do justice in the space available here). The main drawback is that, having finished, I found it sad to think how many more books I’d have to read before finding another as enjoyable. Quite likely her Remix, which is in my queue, will provide a fix…

Yearning, Marcela Mendez

What I like best and especially recognize here is Amanda’s ever-renewing hope that all her efforts will finally be rewarded. At first, the reader can see it coming: She thinks this month she’ll finally become pregnant, and we know she won’t. Later, her success seems so inevitable that I at least thought the story was basically over. But no, it’s not that simple, either in life or in good fiction. That part is particularly well handled.

Goodbye for Now, Laurie Frankel

Inspired by the grief his girlfriend feels for her recently-deceased grandmother, a software engineer applies his rare talents to the challenge of dynamic video chats and emails with the dead. This turns out to be possible because of all the digital data people leave behind nowadays in the form of Facebook posts, emails, photos and video, etc. As one of his partners in the enterprise cleverly observes, “You are what you tweet.” The story is a serious effort to explore questions like the nature of consciousness and the correct response to death and sorrow.

The Cave, José Saramago

This novel shows how modern life is robbing our lives of meaning, or even reality, until we are in danger of reenacting Plato’s allegory of the cave. If that message sounds overly didactic, it’s softened by the human warmth in the relationships between the four principal characters–five, if we include their dog, as we should. It’s great writing. But I wish the author had inserted paragraph breaks and used conventional punctuation.

The Girl Who Tweaked Two Lion’s Tails, Pierre Van Rooyen

This is a riveting story that kept me up late at night. Further, I’m confident that in the right hands it could be made into a blockbuster movie. It has the feel of being based on actual people and/or events. But maybe that’s due only to the way the story is presented.

Strange Worlds, Paul Clayton

The variety from one story in this collection to the next is refreshing, but what they mostly have in common is depiction of a society that could plausibly be in the future for ours. Perhaps a future that’s uncomfortably close. The prospect of stepping into it in our own lifetime may have been the author’s motivation for writing. That is to say, these are cautionary tales.

Escape from Camp 14: One Man’s Remarkable Odyssey from North Korea to Freedom in the West, Blaine Harden

The justification for any government’s existence is to enable its people to have more abundant lives. Any government, any leader, will miss that mark when it recognizes no authority beyond its own lust for power. Then, like the Kim regime, it begins lying to its citizens and demonizing and then persecuting those who might stand in its way. I believe it’s vitally important to acknowledge the effects of this very extreme example. My heart breaks for the multitudes still living the life Shin escaped. And I pray that my own country doesn’t move further in that direction.

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.