July 21, 2017: Protecting Hope

Yesterday I wrote that I started fixating on that comment by the Columbia doctor. Those words—uncommon and concerning—had gripped me. The story is no different a year ago today, on July 21, 2017. I texted with a friend and wondered whether I should reach out to a medical professional to ask for clarification. My friend suggested I contact the nurse at Duke.

I wrote: Maybe. I miss our clinical trial nurse for that reason.

The day stretched on and, by evening, after all the offices had closed for the weekend, I had decided not to put my fears into words. Although “decided” may be too generous of a word. Failed? Chickened out?

I had chosen ignorance and the old adage that ignorance is bliss. Although, in my case, ignorance was bliss with a side of unspecified, ever-present worry.

What about Matt? Yesterday I wrote that I bored into the depths of the Internet and read horror stories, but never shared those stories with Matt. But did he open up Google and begin his own search? Did he fixate on the fact that his tumor had traveled to the other hemisphere of his brain? I can’t know the answer. I don’t know what he did during his downtime in the office or in the hours I napped on the couch while he was stuck watching the movie I’d begged him to put on.

But my instinct is that he did not look. Not because he had decided on ignorance. Or because he’d failed or chickened out. I think he’d simply decided that it didn’t matter what Google had to say or what stories others had lived. I think he’d realized what I didn’t: that ultimately no one’s story could predict our story. In the world of brain cancer, maybe in the world of real life even, no single story can predict the trajectory of another story.

I think Matt realized that whatever result appeared after clicking the “Google Search” button wouldn’t have changed one moment of what we did next. We had decided to follow Duke, put our hope into the poliovirus and the reputation of the doctors. Whether his tumor was uncommon or concerning wouldn’t have changed the fact that we were on our chosen path, and our chosen path had the possibility of a cure waiting at the end. Our own version of a pot of gold at the end of all those rainbows.

Matt and I handled things in very different ways. I doubt there’s a right or wrong way. Too often, I felt how small and alone we were in this battle against a disease. We had Goliaths behind us—Duke and Columbia, and in less direct ways Hackensack and Sloan—but often, to me, it felt like we were ill-equipped and abandoned on the front lines. I needed the worry and research in order to feel like I was in control of the situation, like I could have some impact on what happened next. But Matt, who was never as much of a worrier as I am, needed to look forward, keep himself busy with the present in order to protect himself and his hope.

I find myself doing a version of that in Post Hope. Keeping busy to protect myself and my hope. Last year, I let the full force of ever-present worry in. I let it consume me, eat away at my thoughts during every free moment. But in Post Hope, I cannot let the grief in with its full force. Sometimes I can feel the weight and power of that force just behind the floodgates of consciousness and I know I would not be able to bear the weight of the deluge if the floodgates opened. So I keep busy, let in one manageable scrap at a time, and hope I’m as good as Matt at protecting hope. That works for me, for now. I suspect, once again, there’s no right or wrong way.

What I’ve found is that protecting hope takes a little more work than finding hope; it’s sometimes an exhausting endeavor. And, also, it’s worth every grain of effort.

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