February 1, 2018: Nothing Compared To This

One year ago today, I texted a friend and said: This [this sitting beside Matt’s beside doing nothing but waiting for him to take his last breath] is a whole new kind of torture. All the hard days and months were nothing compared to this.

One year ago today, the days of inaction, of waiting, of watching Matt’s vitals falter and waiver and strengthen and steady, all the while not knowing whether I was hoping for him to live—because how could I not hope for him to live—or whether I was hoping for him to go—because he would not want this existence, which wasn’t even a life, anymore.

The days were wearing on G and H, too. School gave them a few hours of distraction, but I’m not sure whether that sunny, quiet room was ever far from their minds. Their sleep patterns and eating patterns had changed, which was to be expected. Their grief and rage came in unpredictable bursts, which I could understand. Mine did as well. Sometimes the bright shock of that anger was the only way I knew to keep from disappearing into that Post Hope darkness. Maybe it was the same for G and H.

Most of the time—maybe all of the time—that anger was irrational. Directed at Columbia for failing to get him to hospice on time, because if they had, maybe Matt would have been awake. At Duke, because it was supposed to be the best brain cancer center in the world and poliovirus was supposed to be a miracle, and it failed Matt miserably. At all the doctors, who didn’t see what was happening in Matt’s spine, despite all the evidence. At myself, for qualifying my suspicions with “I may just be the crazy wife, but…” But mostly, I was angry at the world, at the universe, at the sun and the moon and all that infinite space in between—because this wasn’t supposed to be our story or our ending and someone somewhere made a terrible mistake.

February is a difficult milestone to reach in Post Hope. February is the month I started with Matt and finished alone. It’s the month that I learned what it felt like to truly crash into that darkness, give in to that hopelessness. It’s a month that this year has snuck up on me, which seems impossible because every day in Post Hope has been measured against February 3rd and every post written for this project has been leading to February 3rd, but impossible has never meant untrue in this story. Waking up to February on the calendar is not like drowning in a grief wave–that seems too kinetic for this, which feels more like a settling. Maybe waking up to February on the calendar feels like sinking and stabilizing into the unforgiving weight of an absence.

If every month has had a theme, then the theme of February is, inevitably, loss. The stories left to tell in February are sad, because this story does not have a happy ending, but this project has never been only about the tragedy of  brain cancer. The story has always been one of a hope that burned so bright, it managed to flicker even in the darkest of nights. The story of that darkest night and that flickering hope is the story left to tell. What remains after hope disappears is the question waiting to be answered.

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