When Matt slept late on July 30, 2017, I remember not feeling too worried. He had good reasons for sleeping in. Not only had we been out late the night before, but also, our new nurse at Duke had warned us that Matt might begin to feel the effects of the chemo around week three, which was nearly upon us. I remember being happy Matt was getting some rest. He was planning to leave that afternoon for a two night corporate retreat and that could mean late nights and early mornings.
I took G and H to the lake to get them out of the house. Matt stayed home and packed. Around two, I texted him to make sure he ate lunch before he left. We continued with the “Or I am some steak” joke, which we both seemed to still think was hilarious.
While the kids and I were out, Matt sent in the final, nonrefundable payment for a November vacation we’d planned with G and H.
In the beginning of our story, our hope was founded on nothing but desperation and a few uttered sentences by the doctors. In the middle, our hope was founded on the 60 Minutes special touting the poliovirus as the cure. As we approach the last third of our story, it occurred to me that one year ago today, our hope was based on all of that—desperation, uttered sentences, that 60 Minutes special—and something else. Hope was based on something more tangible. At this point, hope had been ground into conviction.
We no longer simply hoped Matt would get through the bumps in the road. We expected it. We’d been through so much worse than a headache, a blip, a bout of strange behavior, a confused text message, and we’d bounced back—he’d bounced back—every time.
Hope, now, was based on previous experience. Hope, now, had been transitioned from something intangible to something solid, to memories of days and weeks and moments we could point to and say: been there, done that, overcame that.
The sum of your experiences. We’d made miracles in the past, and without a doubt, we’d make them again in the future. By November, we’d be back in an upswing.
The collapse of that particular (unsound) logic is often what makes post-hope feel unpredictable and out of control. The knowledge that things will be okay because things were okay before has failed, and the fact that things might not be okay is never far from my mind. It makes every moment feel volatile.
The other day, I received news that could once again turn our—G, H, me—lives upside down. Nothing devastating, but adapting to the news will require that we—G, H, me—blaze another new path. And starting down a new path in an unpredictable and out of control post-hope world is terrifying, and simply exhausting.
And apparently, impossible. Because as I sat in the car, listening to G and H argue, waiting for insurance and pharmacies to get their acts together, trying to figure out how I was going to manage this new path alone—all while missing a friend’s birthday party—I felt the tears, the terror and the exhaustion.
Then a particular song came on the radio. And I took a breath. And for a moment, for a heartbeat, it was there. An ember. An ember of hope still burning. Not based on past experience. Not ground into conviction. But an ember, nevertheless. An ember just bright enough to believe it will all be okay.
Just bright enough to believe hope hasn’t completely vanished in post-hope.