One year ago today, Matt texted me a headshot for his LinkedIn profile and explained that he needed to update his current picture with one that shows him bald. He added a sad face—which I think was more for show than because he was truly upset. (Hair loss will get its own post at some point.) We joked about LinkedIn, chatted about dinner, and remained blissfully unaware that we were perched on the edge of our upswing. That we had six days left of waking up without that weight on our lungs. That after we fell from the edge of this upswing, we’d never quite recover.
Two years ago today, for reasons I can’t remember, insurance would not approve a MRI for Matt based on the prescription we had. Without a prescription, the radiology center would not let Matt keep his appointment. Somehow, all the forward progress we’d made had vanished within minutes and we were back to the very first step. This time, we didn’t bother with Duke or Hackensack. We turned to the neurosurgeon, who finally agreed to write the prescription and submit it to insurance for us. By 2:24 p.m., we had no prescription and no pre-approval. When Matt called to check in, the assistant at the neurosurgeon’s office said there were six names in front of us who needed MRIs scheduled and approved, and she couldn’t guarantee she’d get to Matt today. Stressful, because we were three weeks out from surgery; the time to settle on a treatment was quickly disappearing.
But because Matt was Matt, because at his best he could always talk himself into the front of the line (which was one of my very favorite things about him, particularly at the airport), he ended the day with a prescription and pre-approval. He texted that he was anxious to get started soon with somewhere. On June 27, 2016, we were perched at the very edge of the battle, days away from officially starting treatment.
The story has not been difficult to find over the last few days—we were in the trenches of our battle both in 2016 and 2017—but it’s been difficult to write. I’ve been struggling to feel connected to the version of ourselves we were back then, because I know what happens next. I know the blow about to hit the 2016 version of Matt and Elaine. I know the painful plummet waiting for the 2017 version of Matt and Elaine. And I’ve been acutely aware—unable to escape the truth—that in 2018, Matt and Elaine exists only in memory.
Meaning, I’ve been perched on the edge of a grief wave for days. For the last week or so I’ve been writing about the lake party, kindergarten graduation, the first day of camp, while living these events in the present. Last week, G, H, and I went to the end of the year lake party, without Matt again, but now without Matt has taken on an entirely new meaning. A few days before that, G and I watched H graduate from Kindergarten, the same way Matt and I watched G two years prior, and my heart broke over the knowledge that Matt will never hear H read. Two days ago, the kids had their first day of camp, and for the first time since they started camp, when that bus pulled away, I set my own schedule; I didn’t have a battle against a brain tumor outlining my day, and I was hit again with the knowledge that not fighting without Matt is harder than fighting beside Matt.
The pattern seems to be whenever post-hope gets too loud, too static-filled, I struggle to connect with the easier days in our story. Whenever post-hope pushes me to the edge of a grief wave, as it has this week, I can’t help but stray into the darkest days and find myself losing my hold on hope.
I suspect as the days go on, as the birthdays, anniversaries, and milestones approach, post-hope will get louder. The challenge will not be to write the story—I’ve said before that some days are burned into my mind likes brands—but to not lose hope in 2018 as punch after punch is delivered to those past versions of Matt and Elaine.
What I know for sure is that I don’t want to lose hope. And hopefully, that’s enough to both deliver on my promise of light and love in the dark days to come, and to survive this grief wave, and all the ones after.