The hours free of worry were short-lived. Matt woke up on Saturday, September 2, 2017 and told me that his left foot felt numb. I called the radiation oncologist and he answered on the first ring. He told me that numbness wasn’t an uncommon side effect and it should be temporary. He increased Matt’s dose of Dexamethasone and told me to call him again the next day, or earlier if I noticed any changes for the worse. The doctor seemed unfazed by the fast appearing symptom and, by the afternoon, Matt was cracking jokes about doing numb-footed laps around the neighborhood.
Around noon on September 2, 2017, our family of four was reunited. Matt’s sister and mother drove G and H home from the beach house with no shortage of carnival prizes, shells, and sand crab claws stuffed into their suitcases. G and H were full of stories to share and new skills to show off. G had learned to ride her bike—start, coast, and brake—and H, the picky eater, had eaten a taco.
They’d had a great time and, when listening to their stories, I felt that now too familiar tug associated with trying to live in two worlds at once. I wouldn’t sacrifice being there for Matt—I thought of the man staying alone at the hotel while undergoing treatment too often—but I struggled to make peace with the fact that we had missed this week of memories with the kids. We—Matt and I—were attempting to straddle two worlds, which often left us (or just me) feeling off balance and inadequate.
The cruelty of brain cancer, maybe any disease, is how much time and energy is aimed toward treatment and detoured from normal life, how little there is left to give to normal when all that mental space is occupied by a life you didn’t choose.
In Post-Hope, G, H, and I are ending our annual week at the shore with Matt’s family—ending our first week at the shore without Matt. After breakfast, we will pack our things and I will drive G and H home, their suitcases full of arcade prizes and gummy bears, their legs a patchwork of mosquito bites and bike riding bruises. This year, I didn’t leave the kids early to chase a cure for an aggressive, relentless disease. I didn’t feel as though I needed to be in two places at once. And yet, I did often feel as though we—G, H, and I—were straddling two worlds. The world of grief, a world necessarily mired in the past, in which every moment called forth a memory from a time before, and the world of the present, in which new, good memories were made. I ran my first ten mile loop, H (nearly) learned to ride a two-wheeler, and G fell in love with boogie boarding. And in between, we talked about Matt often, sometimes casually, sometimes hypothetically (Matt would have hated the cheesy singing ice cream parlor), and sometimes with tears in our eyes and heaviness in our hearts.
I thought for a long time how I would describe this week, this milestone first without Matt. No words came. For too long, no words came. And I realized, at least for the near future, I don’t think I’ll be able to explain this week, how it felt to straddle these two worlds, how it felt to miss Matt on a visceral level every moment of every second of every day and to, at the same time, look out onto the ocean and feel like we—G, H, and I—were a little back to our old selves, selves I’d assumed were gone forever.
They (whoever “they” are) say that after a great loss you never move on, you simply move forward. I haven’t wanted to move on or forward. I’ve chosen to write this blog and live in the past and leave everything in the house exactly as it was that January day when Matt casually went to the hospital for a workup. That hasn’t changed—I’m not ready to leave the past. But after this week, after seeing those glimpses of our old selves alongside glimpses of our new selves, I can almost believe we won’t live in the past forever, that there’s a story waiting for us after Post Hope. A story for a newer version of our old selves. The post-Post Hope story. Certainly framed by heartache—always—but maybe also rooted in hope.