One year ago today, G and H returned to school after a very long winter break, Matt slept-in until 10:30, and he and I went on errands together in the early afternoon. As we drove by a bagel store, an Ed Sheeran song came on the radio and Matt conflated the two unrelated things—the bagels and Ed Sheeran song—in his mind and we ended up driving around looking for Ed Sheeran’s bagel place. Not surprisingly, we didn’t find it and Matt agreed to stop looking without too much argument.
When a friend texted to ask how Matt was doing, I said he wasn’t great, but he also wasn’t scary bad so we were definitely moving in the right direction.
Not scary bad. Not because his cognition had improved, or because his warped reality was slightly less warped, but because he wasn’t angry. That rage, that temper, had begun to fade thanks to the Dexamethasone taper. The decreased dose of the anger-inducing steroid made our days easier (and proved Matt’s anger wasn’t his; it belonged to the medicine that was supposed to control his symptoms). And that ever shifting line between a good day and a bad day? Once again, what once would have been a difficult day (driving around looking for a place that didn’t exist because Matt had conflated two ideas) had now become a day during which breathing came easier.
Every month has had a theme, a story of its own, of sorts. April was the story of a rapid decline; May the story of an upswing and Avastin; September the story of 9-1-1 calls and miraculous MRIs; October, hydrocephalus and Kessler; November, when the hope for a cure was diminished to an ember; December, that anger. January 2018 is no different. January 2018 has its own story, and unsurprisingly, it’s a difficult story. January is the story of a decline, the story of heartbreak and long days and moments that brought me to my knees.
These were the days when I began to realize, consciously or not, that we (Matt and I) weren’t we, anymore; the darkest days, when I wished desperately to go home—to the person who was my home. These were the mornings when I’d wake after a nearly sleepless night with knots in my stomach. These were the afternoons when I felt like we (I) just had to keep going, because if I stopped, if I paused to rest for even a second, I might not have the energy to start again. These were the nights when I picked up the crumbling remains of our hope and wondered how we ended up here.
These were also the days when we (our family of four) were surrounded by so much love, it took my breath away. These were the days I stumbled and always found a kind hand to hold onto. These were the days when hope—hope for one last miracle, hope for one last upswing, hope for the sake of hope—burned the brightest.