March 31, 2017: First day of the rest of our lives

Matt was discharged from the hospital on this day a year ago. Instead of flying back as planned, on doctor’s orders we stayed in North Carolina. We walked around the gardens, took in a tennis match next to a bunch of hungover college kids who made us feel super old, and discussed the pros and cons of sending our kids to Duke (as if we had a say in the matter). We shopped at the campus stores and we were so high on Duke that Matt bought a hat, despite a family connection to UNC. We were Team Duke all the way.

All the while, I kept staring at Matt (a habit he grew to really despise…whoops) as if I could see what was happening inside his brain if I just looked hard enough. But I couldn’t help but think about the fact that I was walking around with someone who had an experimental virus infused into his head. Sounds like the beginning of some sci-fi movie, really. We had NO idea how his body would react, how his tumor would react. How he would react. The doctors warned us that most likely there’d be some brain swelling in a few months (all to be expected, just the immune system kicking into high gear). If it happened, we’d deal with it then, but otherwise, we should expect life to go back to normal.

But normal had gone out the window way before he was diagnosed in June 2016, when Matt’s behavior had become so strange, so unMatt-like that I was worried our solid marriage had started to crumble. Luckily, our marriage was just fine; it was everything else that would begin crumbling and we never quite had the chance to rediscover what normal looked like.

I’m typing today after a rough night in this post-hope year. Yesterday, we celebrated Passover. I’m not religious. Matt wasn’t particularly religious. It didn’t occur to me that the day would be tough. And yet, sitting at the table, sandwiched between Matt’s parents and the kids, all I could think about was what we had all lost, who was missing and how desperately I didn’t want to have to do all of this without him.

I picked up my phone a dozen times to text a friend, someone, anyone, about how surprisingly hard this day was for me, and like so often happened during the last year, I put my phone down. Because, actually, misery doesn’t love company. I didn’t want to ruin someone else’s night with a one line message. I didn’t want to leave someone else feeling as helpless and hopeless as I felt. Looking back now through Matt’s emails and texts during this time, I can see that he shielded his friends and family from the worst of it all, too. Even when I could see him falling apart in front of me, his communication to the people he cared about revealed nothing of his struggle. He never, not once, broke down over the hand he’d been dealt. Not even in front of me. There’s a heartbreaking selflessness in that small act that speaks to the grace Matt showed every day of his battle.

This blog was born out of the idea that a year ago today, even in my darkest, middle-of-the-night fears, it didn’t occur to me that Matt wouldn’t be here, that on March 31, 2017, we had less than a year left together. Though we were only a year younger then (young and naive and so very, very hopeful for the future), I feel like I am infinitely older today.

Team Duke all the way.

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