On October 17, 2017, Matt was one day closer to finally coming home. He was recovering faster than anyone—except the psychic—could have predicted.
One year ago today, Matt moved up from yellow level to green level at Kessler. This meant that he was completely ambulatory—he could walk on his own. He was allowed to get up and move around the unit without supervision. His wheel chair—the one he’d been belted into just seven days earlier—was now a forgotten accessory taking up space in the corner of the room he shared with the uncooperative roommate.
Yesterday I wrote that I don’t remember much from this week. That’s still true. The week is largely a blur. But when I reviewed the text messages from today and sat (for too long) with the wisps of memories floating in my mind and no words to write, more memories flooded in to fill in the blanks of this day.
I remember Matt’s smile, the animation in his face as he enjoyed a freedom that he hadn’t had in almost three weeks. I remember the proud way he walked down the hallway wearing a laminated piece of green paper around his neck—his victory medal. I remember the bewildered looks we exchanged as his roommate thought of new and more outrageous reasons to refuse the therapists at Kessler.
I remember driving G and H to Michael’s—the crafts store—after activities, homework, dinner, to buy supplies for G’s class pumpkin decorating project. I’m not sure why we needed to rush out at night—the project wasn’t due for another few days—but it must have felt necessary at the time. I remember the mostly empty aisles and the race to reach the register before the store closed. I remember thinking that in our normal life, our before life, I would have picked up the supplies while the kids were at school, or at the very least left the kids home with Matt to make a solo run to Michael’s. And I remember G’s and H’s excitement. The novelty of staying out late—and shopping!—on a school night, the secret glimpse into a mysterious adult world. On the drive home, I remember thinking how resilient they were. They’d seen and heard and experienced the reality of brain cancer and still found joy in a late night Michael’s trip.
And then this final memory. I remember how easy it was (for me) to lose sight of the fact that a victory at Kessler was not a victory against Glioblastoma. I knew Kessler wasn’t treating the tumor, that attaining green level did not mean that the tumor had shrunk. I knew the treatment road was still long and littered with potholes.
But attaining green level gave us our next glimmer of hope. Because Matt had proved once again that he could defy the odds, that it was still reasonable for us to believe after every down cycle there’d be an upswing. Sum of your experiences. The more times Matt bounced back from a crash, the easier it was to believe he would always bounce back.
I’m not sure how many upswings are left in this story. Not many after this one, if any, at all. And yet, hope burns for the next fourteen weeks–January 23rd. For the next ninety-eight days, an ember of hope survives despite no discernible upswing.
Because Matt attained green level. Because he wasn’t supposed to survive the seizure at the local hospital. Because he wasn’t supposed to be okay after the hemorrhage. Because he talked his way onto a flight. Because he was going to see his kids graduate high school. Because we’d seen three rainbows and we were in this no matter what and we didn’t know how to believe any different.