Matt and I didn’t exchange one text on August 3, 2017 until 6:26 p.m., when he texted me to let me know he was leaving work and wanted to know what he had waiting for dinner.
The lack of texting could be irrelevant. As I’ve revisited each day since March 26, 2017, I’ve found a handful of days when Matt and I simply didn’t text much for one reason or another. And, if this short text message exchange had been in January 2017, or August 2016, or any other time during our thirteen years together, I might not look back on it and see what I see now. Because what I see now is informed by hindsight, by the events that will unfold one after another within the next six months, and the prevailing memory that Matt was just slightly less himself. What I see now, that I didn’t before, is what slipping away to brain cancer looks like. It looks innocent, like an entire day passing without any communication. It looks like questioning yourself and your marriage while taking for granted the fact that for twelve years, your husband almost never failed to send some message in the middle of the day, whether to update on his lunch or the weather or how ridiculous the current news cycle had become.
On April 9th, I wrote that after Matt’s first tumor was removed, it was like a lightbulb had turned back on. I also wrote that, back then, we didn’t know that the lightbulb didn’t simply shut off, that it dimmed and brightened and flashed on and off in inconsistent and unpredictable ways. The blip a week earlier is one example of the lightbulb dimming and then brightening. I feel fairly confident, knowing what’s coming, that the lack of text messages a year ago today is another example.
Writers are often cautioned about starting the story in the right place. Too early and the reader gets bored. Too late, and the reader is left confused and unable to connect with the protagonist’s journey. In looking back, in slowing down the pace of our story, I am astonished that so much of the story has yet to be told and I can’t help but wonder whether maybe I started the story in the wrong place, too early. Possibly. But I don’t think so. I hope not. I think for this story, to understand brain cancer and our year of hope, I needed to see where we’d been—revisit our normal and easy and boring—in order to make sense of the way brain cancer caused our patterns to slowly shift and disappear.
In post-hope, today marks six months, a halfway point. As much time has passed in post-hope as we had left in our year of hope a year ago today. One year ago today, we had exactly six months left of hope. One year ago today, the term gamma knife was reserved for science fiction authors, the word leptomeningeal was used only in textbooks, and prism glasses were something for characters in dystopian novels. Today, those are words that belong to a tragic, too real story.
The six month mark is hard. That’s a simple truth I cannot sugarcoat. But, I am left with this thought. Brain cancer is the slow deterioration of body and mind, breath and soul. It’s a disease and a heartbreak and a road nobody—patient, caregiver, husband, wife, parent, child—should travel alone. Since I started this blog, I have never felt alone on this journey. Not for a moment. And I am so grateful for everyone who’s continued reading along—even if I did start the story too early. It makes the most suffocating days of post-hope that much more breathable.