January 21, 2018: A Day Apart

On September 10th, I wrote that Matt and I would only spend three days apart from that day forward. January 21, 2018 marked that third and final day. Matt had been in the hospital for a full week. I’d been racing back and forth, splitting my time between Matt and G and H, which meant I was often relying on friends to help carpool and family to come babysit. It meant a disruption in G’s and H’s routine, despite all efforts to keep their days as normal as possible.

The disruption to routine, absent father, and inconsistent mother had begun to wear on G and H by January 21st. For too many nights, H had struggled to fall asleep and stay asleep. G and H had both started to act out in subtle ways that I knew meant they were struggling with too many big emotions. They needed a dose of normalcy and consistency. When Matt’s parents suggested I stay home while they go into the city, I took them up on their offer. I made that need assessment and decided that for this day, G and H needed me more.

And then I saw Columbia’s phone number flash across my screen. A nurse was calling to tell me that Matt had tried to stand up by himself and he’d fallen; he seemed okay, but they were taking him for an x-ray on his left shoulder and left hip just in case. I remember that fear and that guilt and that desperate wish to be in two places. I needed and wanted to be with G and H—to give them that dose of security and consistency they were missing—but I also needed and wanted to be with Matt—because it was easier to fight for Matt right next to Matt rather than worry about him from a distance. It was easier to feel in control of the storm while in the eye, rather than on the perimeter.

Matt’s parents arrived at Columbia shortly after the fall and confirmed Matt was unharmed. They took control (better than I would have) and made sure Matt had his x-ray and was assigned a spotter, someone whose sole job was to ensure Matt didn’t fall. The x-ray confirmed nothing serious had happened. But the fall had confirmed that Matt could not be left alone. He’d been unsteady at home. That unsteadiness had worsened, and he didn’t seem to possess the awareness to recognize it.

Matt’s parents and I turned our focus to rehab, to Kessler. The doctors hadn’t yet mentioned discharge, but we (Matt’s parents and I) knew from experience that the discharge conversation wasn’t far off. Medically, Matt was stable—he was confused and unsteady and agitated, but he wasn’t in need of hospital intervention—which meant the doctors wouldn’t keep him in a hospital setting.

But he needed more help than I could give at home. So acute in-patient rehab. The logic was that he’d done so well at Kessler once before—regained his strength and cognition so swiftly—that we could expect the same results again. It was sound logic. Or, we had believed it to be sound. We didn’t have all the information; Matt hadn’t yet had the spinal MRI.

Because one year ago today, the flu epidemic was raging. Columbia’s ER was turning people away without seeing them. It was a case of city hospital overcrowding to the nth degree and Matt’s MRI was simply not a high priority. He was pushed to the back of the line again and again in order to make way for more pressing cases.

The speed with which brain cancer destroys will never not leave me stunned. The speed with which we hit our final lasts will never begin to make sense. Matt’s last day at Columbia, his last text, his last words to me all happen within a week that started with a plan for rehab. This is how the week hope vanished began.

It’s the week hope vanished, but re-reading the letters I wrote to Matt, I know with absolute certainty that hope didn’t go without a fight.

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