What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category the book

 
 

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.

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.

Books Enjoyed in 2015

books and audio

As happens every December, people are announcing and/or voting on the best books of the year. And as always I find that despite having absorbed over four dozen titles in 2015 I have not touched a single one from any of their lists. (Possibly that’s because I’m still working my way through books written long ago.) For the last five years my response to these lists, since I preserve my thoughts on everything I read, has always been to share my own favorites.

This year’s list is divided between books enjoyed in audio and print format. I’ve acquired a new interest in audio because my memoir, What About the Boy, appeared as a downloadable audiobook early this year. Also, I’ve done a huge amount of driving in recent months, and relieve the tedium only by incessantly popping CDs of audiobooks into the dashboard.

Feel free to click the titles below to see more complete write-ups.

Audiobooks

Thirteen Moons, by Charles Frazier

Sometimes when driving while listening to an audiobook, I have found that the complexity of the narrative, in combination with the challenges of staying alive on the freeway, obliged me to play a CD more than once. With Thirteen Moons, I replayed the first disc simply for the pleasure of listening to Will Patton declaim that luscious prose.

It’s the story of Will Cooper, who begins life very early in the 19th century as an orphan. Sold into bondage by his aunt and uncle, he travels into the border region between an unidentified southern state and uncharted Cherokee territory, there to run a trading post (taking in animal hides and ginseng in exchange for fabric and plow points). He comes of age under the influence of two surrogate father-figures, a full-blood Cherokee named Bear and a treacherous rascal named Featherstone. He finds the love of his life in a girl who already has a complicated relationship with Featherstone. He purchases his own freedom, educates himself through close study of literature and the law, and later travels to Washington in hopes of preserving some vestige of Cherokee rights and land from advancing white civilization. Along the way he meets well known historical figures like Andrew Jackson and Davy Crockett (and no doubt others I failed to recognize). He grows old matching wits with various government functionaries, rising to elected office, and even participating in a few skirmishes of the Civil War. He recounts all this in an age of horseless carriages and primitive phonograph machines, observing that “it’s a bad idea to live too long. Few carry it off well. But nevertheless, here I am.”

This package of CDs, which dress up both the story and the telling with fetching mood music, is surely the best way to experience Frazier’s novel. I thought it was wonderful. I admired his first book, Cold Mountain, when it came out several years ago, but didn’t realize until now what a first-rate writer he is. Thirteen Moons might just be the elusive Great American Novel.

Noah’s Compass, by Anne Tyler

Anne Tyler’s favorite character types tend to reappear in different stories. For example, in Noah’s Compass shy, reserved Liam resembles Macon in The Accidental Tourist, and also reminded me of Jeremy in Celestial Navigation (which I recall with a shiver from a reading at least 15 years ago).

These men are pretty much taken for granted by their families. They are realizing belatedly that they’ve been passive bystanders in their own lives, and after being shaken up by an upsetting event they notice that they’re just barely coping. In fact, they are winding down, and are somewhat alarmed by that, but don’t know how to ask for help.

I wouldn’t be surprised to know that a lot of guys see something of themselves in these portrayals. I do. For years I’ve said that Macon Leary is the character in fiction with whom I most closely identify. And now, like Liam at the beginning of Noah’s Compass, I’m a recently laid-off older worker.

It’s a touching and very sweet story, populated with characters that I recognize. I knew almost from the start not only that I would give it five stars, but that if I can give only five stars to books like this, I’ve been too generous with stars in some other reviews.

Homer & Langley, by E.L. Doctorow

I was pretty far into this beautifully told (and narrated) tale—about two highly eccentric brothers living in Manhattan, one blind from an early age and the other given to a kind of brutal nihilism—before suspecting that the characters might’ve been real people. A quick online search then revealed that a Homer and Langley Collyer did indeed lead infamously reclusive lives for many decades in a Fifth Avenue brownstone, until being found dead there in March 1947. (Langley had died after triggering one of his own booby traps; Homer then died of starvation and neglect.)

E.L. Doctorow builds on the available facts, taking the perspective of Homer (whom he has typing it out using a Braille typewriter).

The brothers’ increasingly cluttered and dysfunctional house, a magnet to misfits and even to a latter-day de Toqueville, is surely intended as a metaphor for the country they live in. I’m not sure we are given a reason for why this has to occur as it does. Homer traces the steps, beginning with a recollection of the days when their parents led grand, high-society lives in that same house. He senses the “shame” that ought to be attached to what has happened, and perceives the frightening trajectory they are on. Yes, it’s clear to him that the story will not end well. Perhaps in an effort to compensate, his prose becomes increasingly lovely as the facts presented become more grim.

Calling Crow, by Paul Clayton

This one is kind of special, because I know Paul Clayton and know he’s a worthy author with important things to say, and also because Calling Crow is narrated by Kevin Arthur Harper, the same voice actor who rendered What About the Boy?. I shouldn’t comment on the content, however, because I’ve not been able to listen to it as easily as I have books on CD. Like my memoir, it exists as a downloadable file. I can see how this format offers certain advantages, but given my listening habits and the equipment available to me, accessing it has been awkward. Consequently, I now understand those friends who encountered technical difficulties with WATB. No doubt this has something to do with our being of a certain age. I hope you will conclude that I’m a hopeless Luddite and will listen to Paul’s great historical novel anyway.

UPDATE: I did finally manage to hear the audio version of Calling Crow. My impression is recorded here.

Print books

I Love Dollars and Other Stories of China, by Wen Zhu

I can’t think of another collection of stories that I’ve appreciated as thoroughly as this one.

On one level, having spent some time in China, I recognize features that might seem bizarre to Western readers, such as the sidewalk scenarios—the lengthy confrontation with the shopkeeper who insists that a passerby pay a fine for having dropped litter outside her door, or the challenge of the old granny to a man who inadvertently rolled his trailer bicycle over a tomato she’d dropped on the ground. But I think Wen Zhu draws out these points of friction until they become caricatures.

These stories do not indulge any saccharine preconceptions we may cherish about the way this world ought to be. Instead, they shine a brilliant light on the world as it often is. And in the process they somehow made me laugh several times.

Housekeeping, by Marilynne Robinson

Within the first few pages, I knew this was going to be something special. It’s a story told by Ruthie, the older of two sisters living in “a meager and difficult” little town on the edge of a massive lake somewhere in northern Idaho. Long before their births, these girls as well as the three sisters in the previous generation were dragged to this dreary location, like train cars behind a locomotive, by the grandfather who relocated here, and who was then in turn dragged to the bottom of the lake when the train he was riding derailed and slipped off the bridge “like a weasel sliding off a rock.”

Here, the concept of “housekeeping” means trying to make a go of a setup that feels fragile and fundamentally temporary (a perception that may be conscious in all households for all I know). Ruthie and Lucille have always lived in rather tenuous circumstances. It’s somewhat disturbing, in a way reminiscent of Cormac McCarthy novels, but I have the feeling this is pretty close to the truth.

The Lazarus Project, by Aleksander Hemon

Vladamir Brik, currently unemployed and married to an eminent Chicago brain surgeon, has conceived the notion of writing a book as a means of overcoming his sense of mediocrity.

The subject of that book would be an incident that had occurred 100 years earlier, but the telling becomes interwoven with Brik’s own life. The two parallel stories dramatize essentially the same theme, which is the effect of one party having “unlimited power over someone else’s life and death.”

Brik indulges in some confused speculation about the biblical Lazarus, who was raised from the dead. If people with status, governmental authority, or even a momentary advantage will always make this life so disappointing, perhaps hope in life after death is the only answer. Not that Brik is in the least bit religious. I should mention that, despite this rather grim view, the book is actually quite enjoyable, largely because of the quality of the prose.

The audiobook is in the final QC process

What About the Boy?The Audiobook Creation Exchange (ACX) is putting WATB through their quality control process, after which it will be available on Amazon, Audible, and iTunes. Barring any issues in the quality check, that process should take no more than a couple weeks.

I think the narrator, Kevin Arthur Harper, had fun rendering the accents of all the characters in the story. I hadn’t realized how diverse they all were, and how challenging it might be to switch from U.S Southern to an Aussie accent, to a Japanese accent, to …

Click the image above to hear his very brief intro.

UPDATE (2/9/2015): The finished audiobook is now available for download here (see how to get your copy free of charge). It will also show up on Amazon and iTunes in the near future.

Peak Reading Experiences of 2014

The more you read...

This morning Goodreads announced its annual winners for books new in 2014. They say over 3 million votes were cast in the process of choosing these titles. As always, I couldn’t participate. I wanted to. But once again, despite all the reading I do, I hadn’t gotten around even to one of their entries for any of the 20 categories.

And incidentally, I can’t help wondering how many of those 3 million votes reflect opinions of people actually familiar with all the competing titles—you know, as opposed to simply liking the one book or author they knew. I suspect that number is very small, which means the whole exercise is just an excuse, as if one were needed, to talk about books.

Well, this happens every year. And every year, for whatever it’s worth, I respond by sharing a short list of books that I found memorable and worthy of attention. Not all of the following came out in 2014, but many did. They’re not ranked in any particular way, but all contributed to my growth and enjoyment. Click the titles to see more complete write-ups. (Previous year-end lists are here, here, and here.)

Serve in Hell, by Georgia Gunn

I discovered, after reading this novel and posting my review, that I know the author (she was using a penname). One constant that seems to apply with this author, whether writing under her own name or not, is her refusal to participate in the circus of book promotion. Every now and then she generates a piece of high-quality literature and sets it loose to find its own way in the world. The world being what it is, not much happens (not that anything is guaranteed even with aggressive promotion). Mere chance brought the title to my attention. I’m bringing it to yours in case you’d like to try a very original fantasy that raises serious questions about the meaning of honor and hope.

Dreamer, by Daniel Quinn

Over the years Daniel Quinn has acquired some dedicated followers (disciples?), primarily through his more famous works. Although originally published a quarter-century ago, Dreamer was re-released last year, and it still merits attention, especially from readers interested in the nature of consciousness or simply those looking for a wild ride. This novel is definitely a page-turner, filled with suspense, unexpected developments, and compelling characters.

How Evan Broke His Head and Other Secrets, by Garth Stein

This one probably gets the prize for the best-constructed novel I’ve read this year, and possibly the one I found most touching as well. The focus is on a talented but only marginally successful young guitar player named Evan. For years he has been living with a variety of problems, not least of which is the fact that he has epilepsy and has been taught to “hide his horrible secret from the world [so as to] live a life without a sign around his neck that says KICK ME, I’M A CRIPPLE.” There’s a story behind how he acquired that disorder, too. Given the time of year of this post, I’ll add that its benevolent view reminded me somewhat of the classic movie It’s a Wonderful Life.

Big Brother, by Lionel Shriver

I recommended a Shriver novel last year as well. This one, I think, might be easier going in terms of the subject matter and more hopeful mood. Whereas We Need to Talk About Kevin is about looking back at tragedy in hopes of learning or salvaging something of value, Big Brother is about choosing to leap into a difficult situation in hopes of averting tragedy. The chances of success are not good, and even succeeding may come at a pretty high cost. But given the cause, neither of those considerations is reason not to try. Big Brother reminded me very much of the campaign dramatized in my own book.

In the Garden of Beasts: Love, Terror, and an American Family in Hitler’s Berlin, by Erik Larson

I always include nonfiction works in my reading, and this piece of scholarship really brought a piece of history alive for me. In some accounts, past events acquire a feeling of inevitability. We have the historical record of what happened at a given time, in this case Germany of the 1930s, and for us the details may seem as dead as beads on a string. Of course, it was a different matter altogether for people living through those events, whether they were frightened or disposed to look on the sunny side and hope for the best. Working from their diary entries and letters, Erik Larson invites (I think) his readers to imagine themselves in a comparable situation, or perhaps even to see parallels in their own experience.

* * *

This was a good year for reading. Many other titles deserve honorable mention, e.g., Life and Death in Shanghai, Doomsday Book, and even a Michael Crichton novel. Thank God for the opportunity to appreciate books! In conclusion, I hope you’ll pardon my inserting a plug for the upcoming audio version of What About the Boy, which I talk about below. At the moment, 11 chapters have been recorded, and it’s on course for release very soon.

WATB is coming to audio

What About the Boy?

An audio version of What About the Boy? is now in production. I always thought the story needed to be available in that format, and am pleased and grateful to see this coming together.

First, a tip of the hat is due to Lexi Revellian, who writes delightfully original novels (at least, I can enthusiastically vouch for the two I’ve read thus far, Replica and Remix). In August she posted news that the Audiobook Creation Exchange (ACX) had matched her up with a reader/producer for Remix. More recently she announced the project’s completion. (The result is free with a trial membership in Audible.)

Wasting no time, I too established a presence on ACX, where prospective readers could audition.

From our first contact, Kevin Arthur Harper impressed me with his energy and enthusiasm for the project. He did warn that I might find it unsettling to hear my words rendered in another person’s voice, and he was right. To some extent that’s because in his reading it becomes his story. He’s experiencing the emotions and confronting the ideas that WATB seeks to convey. I think that’s fine. Also, he does a wonderful job handling different characters in dialog. My reaction on hearing the first chapter was that he has brought it to life in ways I hadn’t even expected. I hope other listeners will like the result as much as I do.

Click here for a brief sample from the opening pages. The final product will go up on Amazon, audible.com, and iTunes.

By the way, the other options remain for book lovers who prefer Nook, Kindle, or good old-fashioned printed copies.

Blog Hop!

Juliet O'Callaghan

Every year in December I post an item about the most provocative books read over the prior twelve months. I’m already narrowing down candidates for the next list. As much as possible, I like to highlight authors who are new, independently published, or little-known. But doing that doesn’t address any great writing I might be aware of that’s not yet published. Which happens to be the writing most in need of encouragement.

Almost six years ago now I participated for a while on authonomy, a website where aspiring authors critiqued one another’s work. Most writers there were quite good, and some, I thought, were extraordinary. Those with whom I connected all went on to see their work published, with one exception.

Juliet O’Callaghan had a breathtaking novel about a young woman dying of cancer and a well-meaning husband with conflicting loyalties. In my view, the story was ready for prime time in early 2009. Since then, various gatekeepers have blocked its progress. Juliet continues to rework the material, because it’s very close to her heart. Please read the excerpts she’s sharing online and offer some encouragement.

Juliet has invited me to participate in a blog hop, which as I understand it involves answering the question below and giving a nod to her and other participants, who appear to be very much involved in bringing deserving writers to the world’s attention.

SPECIFICALLY, Katie O’Rourke, author of A Long Thaw

AND Anne Goodwin, who maintains a particularly inviting web presence at Annecdotal

AND Juli Townsend, author of Absent Children

These folks are new to me, but I’m delighted to be learning about them and their works (which may well end up on my December list).

BLOG HOP QUESTION:

Why are you working on the project you are writing now? Why is it important? (to you, or to the world, or…)

Every month or so, when the spirit moves me I dash off a short story or poem, and if reasonably satisfied with the result I upload it to readwave. (That site doesn’t compare with the authonomy I remember in terms of helpful peer reviews, but it’s a convenient place to store work.) In itself, meeting readwave’s word count limitations is a worthy exercise.

However, the big project for me now is providing support for production of the movie version of What About the Boy? A couple weeks ago I met with Joel Franco, the producer who has the screenplay, and we talked about the issues of budget and getting the right actors to commit. Progress to date has been slow, but I have the sense that WATB is moving toward Joel’s front burner. He has asked me to contribute supporting material that he will likely be using in the near future.

This is the third anniversary of WATB’s publication. The writing was cathartic, but the work remains important to me because I think it offers perspective for others fighting uphill battles. As Juliet knows, you just can’t let go of some stories.

And that is my first foray into blog hopping. Hope I got it right!

What goes on in there?

large building

I began this blog three years ago with links to interviews I was doing at the time to promote my book. Along the way since then I’ve continued chronicling the ongoing story of the subject of that book (my son Joseph and/or the conundrum behind disability), interspersed with occasional thoughts about writing and reading in general (since that too is important to me) and a snippet or two of what I hope is generally useful insight. I see other writers doing the same on their blogs, possibly with more behind-the-scenes peeks into their daily lives, personal neuroses, ambitions, etc.:

  • “This was a good day. Got a chapter finished…”
  • We will not see the like of Elmore Leonard again…”
  • “I really want to go to Hogwarts… I want Hogwarts to be real.”

Typically, the main point of an author’s blog is to let the reading public know about the existence of a certain book. If the blog is amusing or compelling in some way, visitors may feel moved to take a chance and order a copy. At least, that’s what happens when I find a good author site (Sarah Hoyt’s springs to mind). But blogging is much more than simple promotion. As a public record of what is happening in the author’s world, it can be meaningful when those events have a bearing on the author’s subject, or the creative process, or the joy of reading. That’s when web surfers may glimpse a dynamic connecting the author’s life and efforts and shining a light on the reason the book had to be written.

All this is meant as a sort of apologia for the fact that my posts this year have focused on a renewed effort to identify and perhaps even once again help my aging son. That process is a wheel that turns with exceeding slowness, so even when the cause is uppermost in my mind, updates are infrequent. Apparently it must be uppermost in my mind, and I must be persistent, for the wheel to turn at all.

“Patience is a virtue,” according to a very nice lady who phoned yesterday with the results of Joseph’s microarray.

She said that because the medical center will now be initiating a request for another genetics test (this time of me), and she didn’t want me to expect that it would occur at anything approaching flank speed.

Backing up a bit, it’s now finally known that Joseph is missing “a relatively small piece of DNA” on chromosome 11, including part of one gene (identified as LRRC4C). This is “a variant of unknown significance,” because there isn’t a population of other people known to have the same deletion. Therefore, we don’t know if it’s responsible for Joseph’s condition.

Nancy, the lady who called, compared the gene to an anonymous building. We don’t know what goes on in there, she said.

If I too have the deletion, then its familial, likely benign, and we’ll have to look elsewhere for the source of his difficulties.*

However, a few minutes of online research has yielded the news that this gene may be involved in development of thalamocortical neurons, which in turn are involved with transmitting or processing sensory information. It makes sense, at least, that disruption of this might lead to an autism-spectrum disorder, which is the default label applied to Joseph.

(Hmm, I wonder if a full complement of DNA in this gene would also have given Joseph normal height, a heart without a murmur, etc. Oh, and I almost forgot: Perhaps it would have enabled Joseph to walk on schedule as a child. It’s a mysterious building indeed.)

Despite all the above, life for Joseph continues as before. I’m feeding my own inner demon but accomplishing nothing for him. Still, just as technology has emerged to make this test possible, gene-editing therapies may be in the wings.

Maybe.

*UPDATE: Albeit slowly, the story does continue to unfold, which is a reason for new blog posts. But a footnote is needed here to say for the record that we now know I, as Joseph’s father, have the same deletion on chromosome 11. Since I’m not disabled, this is unlikely to be the explanation we’d thought it was. A more expensive procedure called whole exome sequencing can provide more detailed analysis. I would like to have the info that would yield. At the same time, it boggles my mind that we must delve so deeply to find the basis for a condition so manifest.

You’re out of control

tumor-humerusIn sorting through files on my computer, I’ve come across a few paragraphs that didn’t make it into the memoir. I hate to just delete ‘em, however. They speak to the question of being in control of one’s circumstances, which has been on my mind of late.

Eighteen months prior to the episode described below, Judy had been diagnosed with metastatic breast cancer (a challenge, I remain convinced, that came her way as a consequence of years of emotional stress and perhaps irrational guilt at having given birth to a child with developmental problems). The treatment protocol had eventually led to something called high-dose chemotherapy, a now-discontinued intervention in which the effort to kill tumor cells escalates to the point of almost killing the patient. That process complete, she’d returned home from the hospital, much weakened physically and now (at least until the residual drugs left her system) somewhat mentally unbalanced. She believed, for example, that divine intervention had cured our son Joseph of his disability. Her disappointment with me, for failing to see that, was boundless.

One Friday I took time off from my job and drove Judy back for a follow-up appointment. The oncologist thought that, in terms of the cancer, she was doing well. But her mental health troubled him, and before leaving he asked her to wait for one of his colleagues, a psychiatrist.

“Let’s go,” she said firmly to me. “I’m not sticking around here waiting for that clutz. I talked to him during the treatment. I have zero respect for the guy, and I’ve got better things to do than sit here.”

“Are you sure that’s wise?” I asked meekly. But she was already on her feet and heading for the exit, with more than her usual confidence. I followed.

Two nurses were chatting behind the front desk. We might have breezed right past them, but Judy got their attention with a nice smile and said, “I’m leaving now. Please tell the doctor I’m quite all right and I’m going home.”

Startled, the nurses looked back and forth between our faces. “Well –,” one of them began doubtfully. “But –, well, okay…” We were already out in the hallway, turning right. That was easy. At the Radiology department we turned left, passed the hospital pharmacy, then right again past the elevators. Leaving this place behind. A crowd of young medical students milled noisily outside the auditorium. Kids. New fodder for the healthcare system. There’d been a time when I’d thought I was destined to be one of them. It no longer hurt so much to know that I wasn’t.

Then we were outside, gratefully inhaling the fresh June air. Our thoughts were already on the remainder of the day. I would drive Judy home and return to my office for a few hours. The weekend was almost upon us.

The following sequence was not pleasant. Summoned no doubt by the psychiatrist, a security guard appeared out of nowhere and promptly seized Judy by the upper arm—at the very point, in fact, where her humerus had been eroded by the largest of many tumors throughout her skeletal system.

She shrieked with pain and collapsed onto the pavement. The guard seemed taken aback: Was this merely hysterics? The way she’d begun writhing at his feet must have seemed genuine.

“She’s got a tumor in her arm,” I informed him, crouching beside her. He began to look a little concerned. On the other hand, he’d succeeded in preventing her departure. That had been his task.

The shrink arrived on the scene and took over. By this point, Judy had no further will to resist. She allowed the doctor to put her into a wheelchair and take her back inside, with assurances that they’d x-ray the arm. From there, she boarded an ambulance for a weekend of observation at a locked mental health facility.

When she returned home again, her delusions had begun subsiding—but she continued to dwell on the experience of being seized by that guard.

“Every time I think about that, my arm starts hurting again!” she cried.

“Then don’t think about it.”

“Easy for you to say!”

There are various control issues here, I guess.

Specifically not thinking about something can be a challenge for anyone.

Not having the power to correct a very bad situation is much worse. The years we spent working on Joseph’s behalf tested the limits of what could be changed. I’ve always been glad that at least we were free to try, despite resistance from certain doctors and other authority figures. Succeeding in those efforts and actually improving his life, to the extent that we did, was wonderful. We certainly didn’t succeed completely, but having tried remains a comfort.

But worst of all, I think, is the powerlessness that comes when other people take away your freedom to do as you wish. Locking Judy up seemed a little excessive. Yes, for a while there she was hard to live with, but she wasn’t a threat to herself or anyone else. I certainly hadn’t asked for that to be done.

Americans grow up hearing so much about freedom that we may take the word and the concept for granted. These days in particular, maybe we shouldn’t.

Interviewed by Write On America

Adam ScullOn 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.