November 27, 2017 was the last free day Matt and I had before we started a new daily routine. After this day, I knew our mornings would be consumed by the tail end of a.m. rush hour traffic and our afternoons with the race to drive home and eat lunch before the school bus deposited G and H. I didn’t know what to expect for the time in between.
The doctors had told us Matt’s actual time in the radiation machine was minimal. Mere minutes, usually. And we could plan to be out of the city within the hour. Unless, they warned, the machine broke. Then, all bets were off. We’d been in the cancer world long enough to know we should plan for delays.
I spent the day chopping vegetables, prepping foods for the week, and making a time-consuming butternut squash noodle-less lasagna in a desperate attempt to trick H into eating a vegetable—a saucy, cheese covered vegetable, but a vegetable nevertheless. (He took one bite. A small victory.)
I don’t quite remember what Matt did while I labored in the kitchen. Likely he napped in his corner seat on the couch. Probably, he turned on the television, though he struggled to see and to follow plot lines on sitcoms. He couldn’t text—reading was challenging. He couldn’t work—the deficits in his memory and cognition made work impossible. He had cognition homework (though we’d put a pause on cognition therapy until after the new year)—but the sheets were nothing but sources of frustration for him.
I write so often about how I missed Matt even when he was right in front of me. But I wonder often if Matt missed himself. Missed having the mental aptitude to open a news article and read it, or log into his Facebook page, or set his fantasy sports line up. To crack a joke or play with his kids or feel in control of the world around him. All the little things that make up a life.
The cruelty of brain cancer. He was stripped away from himself. The things he enjoyed became impossible.
And Matt never complained. Never raged against the injustice, against all the disease was slowly stealing from him. Gracefully and bravely.
I’ve been struggling to piece together our days lately—which means I’ve found myself rambling just to have something to say. Today is a bit of a ramble. Because the truth is, my record of these days is sparse, very nearly non-existent. The emails and text messages between Matt and me vanished—because he couldn’t write and we spent the majority of the day together, anyway. We weren’t taking many pictures, either. I have only my text messages with a few friends.
It’s the lack of pictures that struck me today. Starting in and around September, I stopped taking photos to chronicle our (our family of four) activities. That feeling—the I need to capture this perfect moment with a photo feeling—had vanished along with the ability to wake up without fear of what the day might bring.
After February 3rd, a family member noted (not critically) that we should have been taking more pictures, chronicling treatments and progressions, documenting Matt, his spirit, his bad jokes, his facial expressions, before they vanished. We should have tried to save some of Matt. We didn’t for the same reason we never discussed mortality, the same reason we left so much unsaid. All that undiluted hope.
I’ve said hope is a two edged sword in that way.
This retrospective, written-word hindsight project is the best I can do now.
Months again, when I started this project, I would have followed up the above sentence with this line: “I hope it’ll be enough.” As in: This retrospective, written-word hindsight project is the best I can do now. I hope it’ll be enough.
But now, firmly planted in the third act of this story, with more than 150,000 words written about Matt and his battle, I don’t have to hope I’ve saved some of Matt—his humor, his spark, his spirit, his courage—for me, and G and H, and everyone else who loved (loves) him. I know (I’m fairly certain, at least) that I have. Not in the way a video or picture could. But in the best way I know how.
And that’s somewhat comforting. Because too soon this story is going to take another sharp downward turn and it’ll be impossible to see Matt. Some of the events will be hard to share and read and re-live. And the way I made it through these days was to remember the real Matt, the Matt I’ve chronicled and documented and shared. Hopefully, that memory will be enough to soften the sharp edges of the next two months.