How It Goes

Sunny has a nurse named Michael who comes daily to change the dressing on her wound. Every 2-3 days, she asks him for an hour lead time so that she has time to shower. Yesterday he said that today his schedule would be light, he could come at 2 p.m. and he'd call an hour before. I blocked my work calendar so I'd be available to help with her shower and to hold her hand while the nurse is here - the wound is incredibly painful when he's cleaning it out.

This morning, Michael called just before 11 to tell her his schedule had changed: he would be here at noon. No big deal, right? She still has an hour. But she also makes herself a protein shake and takes her medicine at 11 every day. So now she has to do those things, and shower, before Michael comes at noon.

I helped her shower on Saturday. Well, more like I hung around and watched. Her movements are both shaky and incredibly deliberate. She thinks about each action - where her feet will go, what she will grab for stability (some of these are really not good options, see: the floor-to-ceiling tension rod that holds her towels). An incredible amount of mental energy goes into each step. She has a system for getting dressed and undressed. There is a rickety chair involved. On Saturday she told me she fell off it once. "Well, the whole thing just toppled over, and then I wondered how I was going to get up." I have since suggested replacing the chair with one that's more sturdy and has arms. "It will be too big, I won't be able to get in that cabinet." We can move the things out of that cabinet, Sunny. We can put the things you use regularly in the other cabinet.

Everything has a system that has evolved out of necessity. The knife rack in the kitchen doesn't have room for even a straight pin. I have tried to make space. Does she use the fish knife? "Yes, I use that to take labels off of jars." OK, we'll leave it. In the bedroom, there are six drawers. What's in these drawers, I have asked? Could we move pajamas up here instead of storing them in the basement? "No, then we won't be able to find anything." The paper recycling bin, currently in a row of bins that has to be moved to use the oven, is 2/3 full of paper bags that just live there. What if we moved the bags and got a smaller bin for paper, I ask. She is thinking about that.