One year ago today, Matt woke up with a headache, which subsided relatively quickly. Later that day, after leaving a movie with the kids, Matt was overcome by another headache, which subsided relatively quickly. Two headaches in one day. Two headaches that Matt insisted meant nothing and I wanted to believe meant nothing.
The key there is wanted to believe. I’ve said before that the dynamic Matt and I had established between us over the last decade meant that I often trusted Matt more than I trusted myself. I’ve said that eventually that dynamic was stripped away, that I had to learn to trust myself, but that the process of learning to trust myself over Matt was a source of endless, isolating conflict.
Beginnings and endings, firsts and lasts, are themes woven throughout this story. Identifying and understanding our lasts is one of the reasons I started writing this story. I thought I knew and understood all our firsts. In writing the story of August 6, 2017, I’m starting to think I dismissed the idea of exploring firsts too early.
The story of today is a first, the beginning of the erosion of our long-established dynamic. Matt said he was fine and I wanted to believe he was. I wanted to believe him, like I always had. But, some inescapable part of me simply couldn’t. Some inescapable part of me had catalogued the subtle personality changes and pattern shifts, the headaches and the blips, and didn’t think Matt was fine.
And the tension between wanting to believe Matt and watching the burgeoning, scary, reality unfolding before my eyes had manifested physically. At 8:48 p.m, I texted a friend to tell her Matt had suffered two headaches during the day and now my eye wouldn’t stop twitching. My friend asked if I planned to call Matt’s doctor. I said Matt didn’t want to call yet, and I added that there was nothing the doctor would do for short-lived, mildly intense headaches, anyway. At this point, we simply had to wait and live and hope.
In looking back, I knew we were teetering, about to drop over the edge into yet another down cycle. We’d been through enough upswings and down cycles that I could see the signs, even if I couldn’t bring myself to admit they were there. And I also knew, despite all we’d been through, all we’d learned about Glioblastoma and treatments, all the hope in our hearts, we were still helpless against the coming down cycle, tragically incapable of doing anything to prevent the fall. We were armed with nothing but an umbrella against a rising tsunami.
And an umbrella is useless against a roaring wall of water, right?
Right. Obviously. Except…
We knew we couldn’t stop the crushing wall of water with an umbrella. The down cycle was coming regardless of what we knew or how prepared we might have been for another fall. But we had that umbrella. And that’s not nothing. Because when the wave came and pushed us over the edge and we started falling, we didn’t use that umbrella, built on hope and past experience and Google research, to stop the water. We used it to stay afloat, (the visual: an upside down umbrella), to ease the drop, to give us the modicum of control we needed to steer and avoid being solely at the mercy of the water. That umbrella turned out to big enough and fortified enough to carry our weight, to keep us afloat long enough to look for the next glimmer of hope, maybe even the next upswing.
In post-hope, sometimes it feels as if we—G, H, and I—are holding up a candlestick to an endless darkness. What can a single flame do? Not much. Probably about as much as an umbrella in a tsunami. But a single flame’s not nothing, also. A single flame can be shared, divided infinitely among others in that darkness with us, and the darkness suddenly isn’t so endless. It might be just bright enough to light the way toward the next glimmer of hope.