What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Inevitability

Given the rate at which I add new blog posts, this is likely the last one that will go up while my son Joseph is still alive. (When the oncologist referred him to hospice services on May 2, the projection was that he had six months “or less.” Then in early June the hospice doctor said the inevitable might be only one month away.)

At the beginning of this phase, Joseph was still very much his usual self. He and I continued to take long walks together. He seemed comfortable and at peace. The hospice people kept phoning and wanting to come over but I argued that we didn’t need them (at least not yet).

Still, they knew, much better than I, how the next few weeks would turn out.

And, undoubtedly, the oncologist had known what to expect for a long time prior to that. He originally presented immunotherapy as a recent breakthrough—a game-changer that meant formerly incurable diseases, namely, metastatic melanoma, might now be conquered! Joseph did have an initial positive response to it, and I responded with optimism.

I clung to that optimism for almost two years, from the summer of 2016 to this spring.

But when the melanoma showed up in Joseph’s bones, late in 2016, and then a few months later in his adrenal gland, the doctor must have known the cause was lost. He didn’t want to tell me, however. Sensing I might not be getting the whole story, I posted a question about the prognosis on Quora, and a doctor there said survival three years post-diagnosis would be unlikely.

When I again pressed our doctor on this, he said in an indirect way that Joseph was on a downward trajectory, and he hoped only to make the slope as gradual as possible.

Having sought an answer, I did not want to accept it. I have a long history of not accepting such answers. But at this point in life I’ve got to conclude that if something is unlikely, for all practical purposes it ain’t gonna happen.

Our culture celebrates the underdog who defies the odds and wins, proving the experts wrong. There are examples! As a boy, Dwight Eisenhower refused to allow a doctor to amputate his leg, and not only did he recover from a life-threatening infection but he went on to play sports, rise through the ranks to become a military commander, and then serve as president. With exposure to enough stories like that, any one of us may be primed to bet the farm on our own long-shot gamble.

We don’t hear about the people who act as Eisenhower did and then die.

Many years before his cancer diagnosis—back in his first year of life, in fact—Joseph’s doctors said he would likely have developmental problems that would affect him throughout life. I swore I would prove them wrong. And, as with the initial response to immunotherapy, I had reason to believe we were indeed heading toward a good outcome.

Even earlier, before Joseph’s birth, I was a hardworking college student aspiring to become a doctor myself. Again, the odds were long. Medical schools were accepting a small fraction of qualified applicants. Even so, I intended to be part of that fraction. Except, as it turned out, I wasn’t. Hoping to maximize my chances, I’d taken a very specialized course of study (histology, embryology, etc.) that did not prepare me for any of the likely job options for newly minted graduates in those days.

Moral: The most likely outcome is the one you’d better count on.

I could list further examples of how this principle has played out. And maybe you could too if, for example, you’ve ever bought a lottery ticket.

Still, are we wrong to dream? Isn’t it preferable to go through our days anticipating some kind of miracle? It’s not only a more attractive way to live, but individually, each of us is probably more attractive when we’re seeking a better reality—as opposed to unimaginative souls who always play it safe.

It’s just that taking this course sets us up for terrible disappointment.

Then there’s the question of faith. Several well-intentioned friends have offered the consolation that a far better future awaits Joseph after he has shed his imperfect physical body. I hope they are right. They can point to Scripture as their authority. Philippians promises that our lowly body will be transformed. I Corinthians says the dead will be raised imperishable. Revelation says “death shall be no more, neither shall there be mourning, nor crying, nor pain anymore.”

I hope that is true. But other places in Scripture say, for example, “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” What About the Boy? recounts what happened when we asked, sought, and knocked. I am not trying to say the Bible is false, but as far as I am concerned it and everything it represents is beyond my understanding. There are quotes aplenty with that message as well. Which makes it rather unhelpful. We can only count on Somebody smarter than us being in charge.

(Whether that’s likely is a question for each of us.)

As I always try to do, I must cycle back and try to view this from Joseph’s perspective. Pain is sometimes an issue for him, but I have no reason to think he grapples with disappointment. I don’t think there are any unwritten anguished blog posts in his head. He just is, as is his destiny. And mine.

Que sera sera


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