July 16, 2017: A Familiar Story

The story of July 16, 2017 is nearly identical to the story of July 15, 2017. G had a birthday party and this time, H tagged along. Matt spent the afternoon determined to finish building the basketball hoop. Instead of having company over for dinner, we went out to meet Matt’s parents.

A friend asked how Matt was doing and I texted this response: He’s okay. I always notice things but so minor that I doubt anyone else would and I doubt means anything new either way.

The story from one day to the next remains unchanged. That duality we lived with, living our lives as if nothing was changing while acknowledging the fluttery anxiety that everything was slowly changing, remains constant. As does the hope for a better tomorrow, a clear MRI, and a miracle cure.

So, if copying and pasting yesterday’s post isn’t an option, what to write?

Every weekend, I run into the same issue. The pace of the story slows down because the pace of our days slowed down. And sometimes that slow pace bled into the weekdays, particularly in the days between doctor appointments or obvious shifts in symptoms. When I started this blog, I thought once I reached the days in July, I’d definitely have something new to write about everyday. But, as it turns out, that’s not the case. The worry was ever-present during these days, but in a consistent way, and like yesterday I’m left wondering how to distinguish today’s post.

I didn’t come up with an answer today, which made the heaviness of the yearly commitment sink in. The other day I calculated that I’ve written more than 70,000 words in our story. (Probably close to 80,000, but I don’t want to exaggerate.) That’s enough words to fill a novel. And I still have six and a half months of daily posts remaining. Six and a half months of daily writing about days that might be hard, but hard in the same way from one day to the next, so I will probably struggle with finding something new to say.

I’ve left myself the opening to quit. I’ve given myself the permission to figure out the direction of post-hope without judgment, without focusing on the words should or must.

But, when I sit to write and have nothing to say and consider not writing, I keep coming back to the thought that I don’t want to quit. I want to see if I can do it. It’s the same reason I agreed to run a half marathon in the Fall with my sister-in-law. I never thought I was a runner (I prefer a run-walk-jog-stroll combination), but when she asked me to train with her, I agreed. I wanted to see whether I could do this thing that I have always said I could not do.

In post-hope, the pattern seems to be knowing it might be too hard, but wanting to prove to myself that I can do this thing that feels heavy and impossible. It seems to be—if I drill down to the heart of choosing not to quit—wanting to hope I can run and write, even though it’s post-hope now.

Which is a statement that brings in a tidal wave of grief, and makes me instantly want to stop and pull back. Because wanting to hope I can run and write feels like a betrayal, like I’m writing a new story without Matt. And I don’t really want to write a story without Matt in it. I don’t even know if I can.

And yet, I’m writing and running and living a new story every day. It’s the duality I’m struggling with at the moment. How can I want nothing to do with a new story and yet choose, every morning, to keep writing and running?

I’ve written before that every and any thought is met with an equal contradictory thought in the world of brain cancer. Apparently, that remains true in post-hope. So the answer may be simply the same as it was a year ago today. Write and run and acknowledge the fluttery anxiety that everything has (not so slowly) changed. Give permission to fail, but also, give permission to keep choosing not to quit.

Let the duality exist. And keep hoping.

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