One year ago today, Matt played in a charity golf outing in the pouring rain. The text messages remind me that I met him, and a dozen of our friends, for the lunch and raffle portion of the outing, and that around 2 p.m., Matt won a free snow boarding lesson. The story there might be that we never took advantage of that snowboarding lesson; by the time snowboarding season arrived, we were deeply entrenched in the final few grueling battles of our war against Glioblastoma.
My memory of the day doesn’t add much more than the text messages. I remember the heavy rain, the cool temperature, and the deep gray sky. I remember Matt’s pants were soaked from throwing his golf clubs into the trunk of his car. I remember feeling disappointed because I didn’t win for whatever raffle I’d bid on. The story there might be Matt’s last time playing golf.
But neither story is the true story of the day. The true story of August 7, 2017 is in the spaces between the text messages and memories, the spaces that should have been filled with Matt’s eye-roll worthy jokes and wit and personality.
At the luncheon, Matt didn’t socialize much. He cracked a joke here or there, he made conversation with friends, but he didn’t move through the room, one dad-joke at a time, as he had so often in the past. He remained, somewhat, muted. The shift was subtle—a few missing jokes, a handful of stories that weren’t told, a spark just slightly dimmer than it had been before—likely imperceptible to anyone else in the room.
I remember worrying that the weight of treatments, the impossible weight of all we’d been through, had broken Matt. I remember worrying that Matt—the guy with the quick smile and the mischievous sparkle in his eye—had been crushed irreparably. I worried that even if the tumors disappeared, Matt would be forever changed.
Remember I said sometimes I missed Matt even when he was standing right in front of me?
I left the outing, and drove home in the pouring rain, feeling unsettled and nervous, and unable to pin down exactly why. I couldn’t understand what was bothering me—Matt had been fine. I couldn’t see then that the missing moments were weighing on my mind. I blamed the gloomy weather and the rain that made it hard to see the road ahead. Most likely, I went home and opened up the brain tumor forums and combed through the stories (again) to find some story that might match our story, that might help make our road ahead slightly clearer.
Around this time last year, we still had good days and fun times, we still laughed and found joy, but the hard days began to creep in, the moments of stress and uncertainty began to outnumber the laughs. It became harder to see Matt when I was looking right at him, and around this time last year, I started missing us, though I can only recognize that truth in hindsight.
And that truth may be why this six month mark has been surprisingly brutal. This latest grief wave has been relentless in a way I haven’t experienced since the first few days of post-hope. Maybe because six months is half a year and that’s significant. Maybe because I was due for a brutal grief wave. But, I think, maybe this six month mark is brutal because it feels like a one year mark. It’s been a year since Matt was truly Matt, and it’s been an incredibly long year.
It’s tricky to write that I started missing Matt a year ago. Writing that feels cruel, like I’m discounting all those remaining moments that were filled with light and love. And I don’t want to do that. I don’t want to dismiss any second of light and love when Matt found a way to be Matt. Those are the moments I want G and H to know above all the others, because those are the moments that represent Matt’s strength, his love for them.
In our year of hope, August was the month of the slow decline. In post-hope, August seems to be the month of looking back on days and attempting to piece together a narrative that could begin to answer the questions how and when.
The challenge then was to understand what I wasn’t seeing. The challenge now is to preserve what I was seeing. The challenge is (and was) always not to get too wrapped up in the heartache and forget to see the light.