January 20, 2018: Firsts And Lasts and Seconds

One year ago today, Matt spent his last Saturday at Columbia. Matt’s dad and I drove into the city together to spend the day with Matt who slept through most of the visit. It was easy in those moments to sit beside him in the quiet room with the view of the Hudson River and make a list of all the things I would tell him when he woke up, things about G and H, about my night out, about his next steps.

But none of that happened. The cruelty of brain cancer, I suppose. Because when he woke up, he was still angry. His anger from the day before carried over and he refused to listen to stories about the kids, about anything.

His agitation was warranted. He was on a high dose of Dexamethasone and confused. The surgery had brought back his language—the aphasia seemed to have somewhat resolved—but the general confusion remained. A doctor—or resident or nurse—arrived to test Matt’s cognition. The doctor asked Matt to show him what one might do with a comb. I knew exactly what the real Matt would say—he’d crack a joke that he didn’t need a comb, and reference the bald head (because Matt had kept his hair shaved since he lost it to radiation in 2016). But Matt didn’t do that. He furrowed his brow and tried to figure out what to do with the imaginary object in his hand. I kept waiting for the joke after the doctor showed him what to do with a comb—the joke never came. Those missing moments.

The doctor then turned his attention to me to ask questions about Matt’s timeline. For the first time in nineteen months, I couldn’t answer the questions. Up until then, I’d had all of Matt’s information stored in my memory: dates of procedures, dosages of medications, all of it. But suddenly, I faltered. I couldn’t remember what symptom happened when. Things had started to happen so fast, the incidents and symptoms, one on the heels of another, and I couldn’t keep track. It was another first in a time when the lasts were piling up.

Yesterday, I celebrated my birthday in Post Hope. The day was filled with friends and family, facials and Facebook posts. It was a nice day and one in which I couldn’t avoid the fact that Matt wasn’t there. As G had warned during her March birthday, “birthdays without Daddy are terrible.” The day wasn’t terrible—for me, usually the days leading up to a significant day are harder than the actual day—but it did bring a new kind of grief for G, H, and me. The grief of a second—for G and H, it’s the second time they’ve decorated the house for my birthday without Daddy, the second time they’ve needed help from aunts or grandmothers to surprise me with a cake because Daddy couldn’t, the second time they’ve been overrun with emotions they can’t quite understand. The grief of a second brings permanence, realizing the heartache isn’t going away just because you’ve made it through the firsts, realizing there’s still nothing to say or do to ease the harsh truth of an absence–it just is. And for those reasons, the seconds might be harder than the firsts.

But then, the seconds are also easier than the firsts. Not the contradictions of brain cancer, but maybe the contradictions of grief. Because the second time around, you know a dark day can be infused with the purest light; and even if the day is impossibly too hard, experience has taught that it’ll be easier tomorrow. The second time around, you know you are strong enough to do this thing you never wanted to do.

The story of post-Post Hope, which will officially begin all too soon, might then be the hollow ache of permanence, but maybe also the fortifying glow of perseverance.

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