What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for August 2014

 
 

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 is the question that you have pondered longest in your life?

The following is a response I entered to the above question on Quora.com.

For about half my life now I have wanted more than anything else to help my son, who was born with a poorly understood developmental disability. I have never accepted the notion that he was somehow “meant” to lead a circumscribed life or that anyone could be ennobled by that.

Boy_shadow

At first, I was appalled to discover that not only could the doctors not help him but they showed little or no curiosity even in whatever it was that had gone wrong. (First unpleasant lesson (relearned many times since then): Trusted experts and authority figures will let you down.)

Later, I found alternative sources of help that, when coupled with enormous effort on the part of our highly motivated family, did provide the little fellow some options in life. But ultimately those resources proved disappointing as well. (Second unpleasant lesson: Don’t expect life to follow the trajectory of an uplifting movie. Uplifting scenes, yes, but nothing approaching feature length.)

I had been taught, and believed, messages such as this one: “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you” (Luke 11.9). My son’s mother and I asked, in every way we knew how to ask. We sought and we knocked. And while we were doing that, our son lost ground. To top things off his mother died, too.

Now, all this is not entirely a tale of woe, because good things have happened along the way as well, arguably even as a result of my son’s disability. But according to my own perspective, promised blessings have not materialized, which points to some very fundamental misunderstanding.

I am still trying to grasp the meaning of hardship and disappointment. In itself that’s a captivating quest. But answers are elusive and many people presuming to provide them do more harm than good.

WATB_MoA

What about the boy (WATB)? 29 years on, I am also still trying to understand the underlying cause of my son’s problem, motivated by the idea that it might then become feasible to treat it more effectively. This year it looked like an answer was at hand, but that now appears to have been a false lead. I blog about these dead ends, but that accomplishes nothing for him.

I have seen this cause — helping my son and ideally in the process making the way a little smoother for others in comparable

What About the Boy?

situations — as the purpose of my life. It’s a cause I’ve not been able to ignore. But given the degree of ongoing frustration attached to it, I feel more confusion than it seems I ought to at this stage.

Maybe confusion is good. I sensed rather early on that an easy answer to all this would have resulted in my becoming opinionated and insufferable (as, apparently, are some folks who think their having achieved greater success means others are at fault for not doing likewise).

So I personally can live with confusion. But WATB?