April 30, 2017, we drove home from the rented house. We were supposed to stop at a friend’s birthday party, but, since my hopes for a quick, magical change in Matt’s symptoms didn’t pan out, we canceled with some vague excuse. In April, unlike in the months to follow, I wasn’t yet describing Matt’s battle in terms of down cycles and upswings. I realized recently that I didn’t start using those words to rationalize away a doctor’s warning or explain why we had to cancel plans until around September or October, when we’d gone through enough ups and downs that I’d begun to see a fairly cliche roller coaster pattern emerge, one where each hill never reached quite as high as the last and each valley dipped just that much lower than before. Ups and downs until finally we lost the momentum to soar at all.
That day would be our last day all home together before Matt left for Duke. It was our last day living with the tremendous weight of the unknown on our shoulders, hoping with one breath that this upcoming appointment at Duke would change everything for the better, terrified with the next that it wouldn’t, angry in the third for ever letting my mind go there for even a second.
It was a tough-ish day. That’s how I described it to a friend. Tough-ish. Ish, because I didn’t want to admit to anyone, not, myself, Matt, or our friends, that I couldn’t handle one more day. Tough, because G had started to say that daddy was mean now.
He wasn’t mean, not in the actual sense of the word. He was frustrated and irritable, he walked out on conversations and lost his patience. On top of everything else he had to deal with, he was, like all of us on that day, living through the day just to get to the next, clinging onto a vague sense of hope with no idea of what to expect.
When we chose to enter the polio trial, we did so knowing that less than a hundred people had ever undergone this experimental procedure. We believed in the treatment so much that it didn’t matter how untested it was. It had cured at least one person, 60 Minutes had run two specials on it, and that was enough. What we didn’t expect, or what I didn’t expect, was how isolating it would be and how difficult it would be to find anyone else who could relate to our specific situation, who could tell us from personal experience not to worry because the journey was a roller coaster and an upswing would come. Someone who could turn vague hope into precise hope.
Because vague hope is hard to cling to. It’s exhausting and frustrating trying to hold onto something that might not be there. You do it because it’s better than nothing.
I still don’t know if the roller coaster pattern is common with brain cancer patients, polio virus vaccine treated patients, or if it’s just how Matt’s illness manifested. But I know, Matt’s incredible ability to bounce back was due, at least in some part, to his amazing brain and his determination to beat the disease.