One day after being introduced to the word leptomeningeal, one day after posting a desperate message on the brain tumor forums because I couldn’t make sense of the articles I’d Googled which noted survival times in weeks and months, Matt and I went to a bat mitzvah.
I remember the day, weeks earlier, when Matt had called one of his oldest friends and RSVP’d to the bat mitzvah. Our RSVP was weeks too late. (At my best, I’m often too scatterbrained to remember to RSVP on time. And I was nowhere near my best.) Matt’s friend graciously accepted our late RSVP and Matt was looking forward to going.
But after the news the doctor had delivered, I wasn’t sure Matt would want to go. He did. He wanted to see these friends that were like family, to celebrate their daughter, who he’d known since she was a baby. So we went.
I remember the long drive down the Garden State Parkway. I remember the rain coming down in sheets and how impossible it was to see the lines on the road. I remember gripping the steering wheel and trying to crack a joke about getting older and my poor night vision. (Every good joke has a little truth, right?)
I remember taking the exit off the Garden State Parkway and the moment the rain let up so I could release my white knuckled grip on the steering wheel. I remember talking with Matt about something irrelevant when he suddenly stopped talking. I glanced over at him and saw the words he wanted to say stuck in his throat, the panic in his eyes as he suddenly couldn’t speak.
Matt was panicking, so I couldn’t. I told him to breathe. I said we should both take a minute and breathe together, and if that doesn’t help, we’ll drive straight to the nearest hospital. I told him it was all going to be okay—we just needed a minute. He nodded and we drove in silence.
And after a breathe, after our moment of silence together, Matt’s words returned. The panic in his expression vanished. I asked if he still wanted to go. Without hesitation, he answered. He wanted to go.
We arrived—late—and ran (walked as fast as Matt’s physical abilities would allow) across the parking lot through the pouring rain. In the entry way, I took off my heels and spilled out the rain water that had collected there. We were thoroughly soaked, thoroughly stressed. But we’d made it.
Matt spotted a few of his high school friends and we went over to say hi. Matt was as good as I’d seen him in weeks, happy and animated and engaged—and within moments, the friend we were speaking with shot me a troubled look. Matt was happy and animated and engaged, but the sentences he was stringing together didn’t quite fit, his answers to questions didn’t quite make sense.
Matt hadn’t told anyone about his most recent appointment, the devastating truth of his MRI. And this bat mitzvah was not the time to share that information. So I didn’t.
When the eye doctor told Matt something was blocking his vision, when Columbia told us (in not so many words) that the MRI was complicated and Matt didn’t have the luxury of missing a birthday, when we learned how thoroughly the tumor had exploded, when I’d Googled the word leptomeningeal—I hadn’t given in to the looming breakdown. Not once in all those instances. I’d swallowed the rising tide of tears and emotions and kept moving forward. I’d had no choice. We’d had no choice.
But suddenly, I couldn’t. The weight of all that information slammed into me.
I said once before that I only delved into the depths of “what if” three times. Once on the way home from a sleepaway camp visit, once during the season finale of Game of Thrones, and once in November. On November 18th, I couldn’t push back the breakdown and through gasping sobs in a secluded corner, I asked myself, “what if.” What if Matt isn’t here for G’s bat mitzvah, for H’s bar mitzvah?
I hated that the question found any kind of purchase in my mind. I told myself to take a minute, scale back the drama, and go enjoy the night. With Matt. Because though he wasn’t himself, he was having a great night. He spoke with old friends, reconnected with people from his childhood, and didn’t let a vicious disease stop him. What I remember most from November 18, 2017 is Matt’s smile, his energy.
I wasn’t in denial. I’d read the articles and studies and statistics. I knew the truth the doctor didn’t say in so many words. I knew our happily ever after had moved even further from reach. The chance of a miracle had grown even smaller. But that chance hadn’t disappeared. And how could I—how could we—give up hope when hope still glinted in the distance? Radiation had worked a miracle before, it was reasonable to believe it could work again.
On November 18th, with reality pressing on our heels, we chose to take a minute to find the strength to keep hoping and reaching for that ever elusive miracle.