Wednesday, January 10, 2018 marked our third day of waiting for a bed at Columbia, and our third day of learning that no beds were available at Columbia. When a friend asked how I was feeling about the delay, I told her it was strange that I wasn’t even annoyed. I wrote: the medical system may have just worn me down and maybe I’m just too used to these delays, but I’ve accepted that badgering the nurse isn’t going to make a difference.
That morning, after G and H had left for school, Matt woke up, ate breakfast, and sat on the couch to nap. He slept for the entirety of the morning and didn’t wake until around noon, when he asked to go to lunch.
Almost one month ago, I wrote about another afternoon Matt and I went out for lunch. I wrote that the lunch was memorable for me, and probably for some of the other customers in the restaurant. Unlike that lunch date, this lunch date had faded from my memory. Not until I re-read my text messages did I remember the table at which we sat, the way sunshine streamed in through the windows, and the way Matt couldn’t figure out how to hold a fork. After that lunch, I debated texting the nurse to update her on what I believed to be Matt’s worsening cognition. To me, he seemed slightly more lost than the day before, slightly more disengaged and confused—and the speed of that decline, the speed with which his cognition began to decline, was nothing short of terrifying.
And then I remembered the moment I decided not to text the nurse. I wonder now, looking back, if that wasn’t a pivotal moment. I’d never before hesitated to call the nurses and doctors and list off everything that had happened during the day. I’d always believed that the more they knew, the more information they were armed with, the more they could do to help Matt. Even when I knew there was nothing they could do, I’d always called if only to remind myself that I wasn’t in this fight alone—I had doctors and nurses fighting by my side. But one year ago today, I didn’t call. Maybe some part of me was just tired—tired of calling nurses and doctors who were as helpless as I was.
After lunch, when we returned home, Matt sat on the couch to nap. He didn’t wake until just before dinner, when we (our family of four) sat together to eat. G and H told us about their days and H tried out a handful of new “knock, knock” jokes on Matt. When Matt couldn’t respond with “who’s there” even after being prompted, H whispered across the table—in a six-year-old’s version of a whisper—that it was okay if Daddy couldn’t do the joke; he was sick and he couldn’t help it.
And that was progress. The fact that H could understand why Matt couldn’t answer his joke, the fact that H didn’t act out due to frustration, was progress. And it was also a reminder. A reminder that even if we’d been beaten down and almost broken, even if we were helpless in so many ways, we could still tell jokes and share a meal, we could, together, push away that invisible monster for just a while.
Not exactly a story of hope, but a story of something just as bright and just as important.