I’m sitting here, trying to write about April 18, 2017, which was actually a funny, it’s-a-small-world kind of day, but I drove down a street last night that I hadn’t been on since January 23rd, and now my brain keeps skipping ahead to the worst days, to the days when I walked out of hospital rooms and thought I wasn’t strong enough to do this anymore and then somehow did it anyway. Some people have called that strength or bravery. I’m not being humble when I say it’s not that. It’s something much less praiseworthy, more akin to need and survival and plain old denial. After all, a drowning person isn’t brave for kicking to reach the surface; they’re just desperate to breathe.
When Matt was first diagnosed, we went to two different hospitals and saw two different neuro-oncologists to get opinions on treatment. The first doctor at Hackensack told him he’d be fine. (Sounds good! Sign us up!) The second doctor at Sloan walked in with a grim look on his face and told us Matt had eighteen months left and we should start making preparations. (Wait, what?) Obviously, we went with Hackensack. But those hours after the Sloan appointment, when we sat on the playroom rug relaying that impossible prognosis to Matt’s parents, were sobering in a way that could have changed our entire journey.
The key there is could have. If we’d started our journey thinking we only had eighteen months, what would we have done differently? Would we have still chased a cure and operated on the belief that things would turn out fine? Who knows, of course, but I think the answer is yes. Because after the Sloan appointment I told Matt it would be okay because I would will him to be okay. As if the strength of my will alone would fix this terrible thing. I completely believed I could cure his brain cancer by wanting it enough. Now, while Matt truly believed in me in many ways (he’s the one who encouraged me to start writing after H was born*), I don’t think he thought my will alone would cure him. (Wild guess.) But he did believe he would be cured. Simply, with a grace and a faith that never wavered. He believed it even after I’d stopped believing it.
My will alone didn’t fix Matt. I have a full year of blog posts to go into all the mistakes I made and all the decisions I regret, but I don’t regret thinking I could will him better. It’s what kept me believing, right alongside Matt, with all my heart and soul that our story would have a happy ending—and that’s how we made it through the days .
So, back to April 18, 2017 and my (not-so-funny anymore) story. I went to see an allergist for my out-of-control Spring allergies (because those trees were budding early, remember?) and the doctor turned out to be my neighbor. Small world. We talked itchy eyes and sneezing. I’d had no idea he was an allergist and he had no idea the battle that Matt and I were waging across the street from him. And he continued not knowing until after we’d lost. Because how do you casually mention a nightmare? How do you bring up in normal conversation days so unspeakably hard you feel broken by the time you climb into bed? You can’t and you don’t, not if you’re willing them away.
*I found the email that proves this statement. Matt’s one request was that I make the dark, mysterious, handsome character based on him.