This is where things started almost three weeks ago now. Actually, they started in her apartment…where she spent…how long? Four hours? Eight hours? Frozen by a silent seizure on the floor of her bathroom.
And we’ve made progress since then. Progress is slow at first, then it speeds up. There’s the breathing on her own. There’s the whispered speaking. There’s the feeding herself. There’s the sitting in a chair. There’s the standing but not walking. Days in between, and each thing makes you cheer. Now each day there is walking. There is lots of talking…though about the same things, over and over, and still whispered. There is the arm bicycle and there are weights and arm and leg lifts.
And each of these things seems less amazing as days go by. And there is the slow boredom of hour after hour spent in senior rehab. And you feel less like cheering and more like cursing.
Progress is inversely related to the rate at which things move. When you’re in the ICU, tests are scheduled that day. Not days or weeks later. Treatment is an alarm away.
Here’s what else progress means: Progress means phone calls with insurance companies. Progress means nobody thinks of her as an emergency anymore. Progress means delays in treatment for the thing that’s killing her in order to work out logistics. And logistics means this: Who’s getting paid and by whom.
Nobody works out logistics when you’re found locked, eyes wide, not talking on your bathroom floor.
And you want to say to these people, Look, there is a fucking tumor growing in my mom’s head. You want to say, A week is a goddamned eternity. But they talk to people with tumors growing in their heads every day. And you realize if you weren’t here to do this for her, if she didn’t have some sort of advocate, a week might actually be a month. Or two. And she’d be drowned by the system.
Like Bettie, who eats dinner with me and mom and has been in this place for three years and has no family and remembers the street number where she used to live, but not the street. Somebody’s spending money on Bettie. And somebody’s making money on Bettie. And she comes to dinner and picks at her meal and makes conversation with anybody who will listen. And she talks about going home. But she’s not going home.
For me, progress means a returned phone call. A helpful person on the other line. An appointment. I’m making progress.