Everyone told us that the first month or so at home after discharge from the hospital after such a long time would be the most difficult period of the whole experience. They were wrong. Of course, this isn’t to say it’s been easy—indeed, there’ve been some pretty dicey moments—but only that there’ve been plenty of really difficult moments in the past.
Of course coming home was difficult at first—no matter how diligently we’d prepared, there were still plenty of things we hadn’t anticipated. There were constant fires to put out, about staff, about supplies, about insurance, about virtually everything. But there are also positive things we hadn’t anticipated. People had for instance told us that patients often do better at home because they’re not exposed to the really hardcore germs that inhabit hospitals; indeed, knock on wood, they’ve been right so far: Brooke hasn’t had any kind of infection since he’s been home. And he’s making much more progress in physical therapy occupational therapy than we imagined possible for a long time.
We’ve been moving pictures around, from one wall to another. The bedroom now has a collection of etchings from Brooke’s family, beautiful old etchings; this isn’t anything like a hospital room or a jail or a suffocating, claustrophobic room, but one with real aesthetic pleasure, if you know where to look. It’s also possible to sit in part of the house we call the “nose,” a room that projects out into the garden and is filled with light; this is new, too. Light. Sunlight. We’d had broad-spectrum fluorescent tubes put in the ceiling of Brooke’s room at South Davis, but they never really managed to make the place seem like a room filled with sunlight; now we have that, without tubes.
And there are pleasures that might seem trivial or utterly ordinary, but are just the same real. L. filled an old birdfeeder with fresh birdseed; within the hour, the backyard was full of finches and junkos and chickadees. They have their winter coloration, L. explained about the finches, and they feed energetically on a mild day like this, just before a storm. You wouldn’t think that watching ordinary birds outside a window would constitute a major pleasure, but it does.
Tonight, which just happens to be the two-week mark since Brooke came home, we were visited by a group of young people coming in from the traditional hayride that goes around the local LDS ward every Christmas—we assume it visits people with disabilities, people with difficulties, shut-ins, singing carols, though perhaps they just came to sing to us. There were maybe twenty of them, junior high and high school age, with all the half-veiled curiosity that characterizes kids of this age. They sang We wish you a merry Christmas; then Rudolph the Red-nosed Reindeer; then Silent Night, with one utterly beautiful soft but perfectly clear soprano voice singing somewhat shyly in their midst. To be on the other end of this was extraordinarily weird. Weird. Extraordinarily weird. Neither of us ever, ever thought we’d be on the other side of that barrier, to be the person that well-meaning kids were wonderfully kindly singing Christmas carols to. It’s a moment that in a way crystalizes the entire experience, especially coming home where this kind of thing can happen, the way one’s whole identity has changed, at least in the eyes of other people and to some extent one’s own eyes. It’s like reaching old age in 15 minutes. It’s like being in a nursing home and having people come in and give away presents to the old guys. What does it do for your sense of your own dignity? There’s Brooke in his wheelchair, pausing in the living room as the carolers pour in the door and at a signal, begin to sing and the voice of the beautiful soprano lifts above the group; there’s Peggy standing beside Brooke, her arm around his shoulders at the back of the wheelchair, smiling. What is it like now, when you populate the scene that is an object of embarrassed pity by these young people? Of course, some of them will be in your own same spot in the future, but they don’t know that now, and we don’t know that, and of course we would all hope it never happens.
Peggy can remember scenes like this from her childhood. She can remember going with a school group every Christmas to sing at the Washington Home for Incurables (now of course renamed). Brooke can remember visiting their former house-man/chauffeur in south Baltimore; there he was with his diabetes, in a darkened room in a Baltimore tenement house, both legs amputated. Peggy can remember being taken to visit a woman who was in an iron lung, encased forever in a huge metal cylinder with only her head sticking out, there in the living room of her home just a few blocks up the street from where Peggy lived as a child.
I just have to learn to enjoy being dependent on other people, Brooke says, and I do, mostly. But did you ever think you’d have to have your bowels probed every morning, have to be hoisted out of and back into bed in a sling, need two people to give you a simple shower, that twenty neighborhood kids would come to sing Christmas carols to you as a good deed?
You see yourself from the outside, Brooke says, you see this emblematic scene, but instead of somebody else’s being in the wheelchair, you’re the one who’s in the wheelchair. And it isn’t a dream. How often we forget, forget, forget. Oh my god. Oh my god, Peggy.
Everyone on earth will be there some day, in some hard place like this, unless they die earlier. But of course at 66, when I had the accident, I didn’t think I was young, I didn’t think I was old, I sort of always thought I was 33 or something. I never thought anything like this could happen. You don’t want young people to stop caroling for people with disabilities, people with difficulties, shut-ins. You don’t want them to do it, either.
Actually what you don’t want is to be on the receiving end of it. And more broadly you don’t want disabilities, difficulties, shut-in-ness to happen to anyone, but they do.