Last Tuesday morning, we lay in our own bed in our house on M Street, after Brooke’s third overnight home visit. We were having tea—tea latté, actually—and reflecting on what has transpired over the past nearly two years. It seemed as if something were coming to an end and something new was about to start.
Brooke had just taught his third class on Thoreau’s Walden the afternoon before, and that evening friends had joined us for drinks, and then others for dinner. We had a congenial dinner, Brooke in his big wheelchair and others sitting around our new little high table, so we’re all at approximately the same height: a nicely roasted chicken and a gentle wine. Then there were the usual bedtime medical rituals, translated to home, and Brooke slept peacefully, with Julia doing all the night care so expertly and silently that it didn’t even wake Peggy beside him.
The next morning—before the tea latté—there’d been the usual cathing, CoughAssist, bowel care, oral care—but these were over, and we had an hour by ourselves to talk over what being at home in our house and together in our bed represented, before Brooke had to go back to South Davis for a trach change and other care.
Early on, not too long after the accident almost two years ago, we’d said to each other that we can still have a nice life together, and now we were recognizing that that was almost upon us, as we prepare for Brooke’s discharge from South Davis. For one thing, we’d always visualized that nice life together as taking place at home, but Brooke’s been in the hospital for almost two years. Now, we were talking about how we’d gotten to where we are now, almost through this long period of institutional life and on the verge of coming home—probably next week--and how important the support of other people has been. Our anthropologist friend who’s interested in networks of relationships and how communities work across cultures had been talking about how crucial the support for us here had been while Brooke has still been in the hospital, and we were talking about it again. There are all kinds of conventional terms for what that evening was like—“basking in the warmth of friendship,” for example. But these aren’t necessary; my overall impression was just one of extraordinary peace, says Brooke, that evening, at home among a close few of our friends.
Somehow the terror of the prospect of going home, where there’s no continuous professional care and the resources of a hospital aren’t immediately available, has receded, and actually being at home was an amazingly rich and secure-seeming experience. It’s home, after all, although South Davis had certainly become a kind of home too.
But going home means packing up—almost two years’ worth of stuff. This afternoon, at South Davis, Peggy’s been cleaning out the dresser in Brooke’s room. It has four drawers—one for clothes, one for medical items, one for miscellaneous items like sticky notes, marking pens, a corkscrew, and of course chocolate bars. But there’s also a drawer entirely filled with cards and letters, accumulating since the early days in inpatient rehab at the U, and continuing to accumulate here. It’s a wonderful drawer with many missives of affection and love. It filled in to a depth of maybe four more inches during Brooke’s “virtual birthday,” the one in March 2009, with an overwhelming shower of cards and letters, and it’s always been the drawer in which we’ve tucked notes and e-mails and letters too touching to throw away—in recent months it’s been so tightly packed it’s almost hard to open the drawer to stuff anything more in. It’s affection, expressed.
Indeed, there’s a lot of love and friendship that’s been extended to me over the past two years, Brooke says, more than I could ever have imagined possible. But at the same time I’ve learned a lot about my own moral flaws. I haven’t reached Kohlberg’s 6th stage. I’m not truly compassionate when it comes to the distress of others, and I tend to think of the ways in which it affects my own situation. That’s not good.
For instance, when I hear about C.’s herniated-disk back problem, I don’t feel the deepest sympathy for her; I think about how her injury complicates our situation. She’s one of our caregivers arranged for when I’ll be home, and now she won’t be able to come. When I think about it more, I have more sympathy for her, indeed empathy for someone in pain (which I know so well), but I haven’t yet achieved that condition of moral elevation in which I can care only about her pain, not mine. I was thinking more about how are we going to fill in this space in our lineup of people?—that’s an awful thing. I’m afraid I’m selfish in that regard. It’s true that my situation requires 24/7 help, but for her, it must be awful, a herniated disk. That’s a terrible thing, with real pain. My heart should go out to her, fully, but it doesn’t go out far enough. So I have not reached a level of outgoingness that I should have reached; there’s still too much self-concern.
This is a religious moment. I’m not telling you this for the blog. I’m just telling you this; it’s what I think about in the middle of the night. How to be a better person. It’s like recognizing all the times you just went about your merry way, disregarding the sufferings of people around you, who lost their children in automobile accidents, or who are losing their wives or husbands to cancer or dementia or other awful diseases, or any of the myriad other ways real people’s catastrophes occur, and I don’t even notice. Or if I notice, I don’t do anything. Or if I do anything, it isn’t much, or isn’t enough. There’s always more one could and should do.
I should have sat down for an hour to compose a letter instead of going on a bike ride, about five years ago, when one of my colleagues’ daughter died of a sudden heart attack. I still regret not doing this. I can see what it would be like to be a good person, but I’m only about halfway there. It makes me ashamed.
Peggy asks a question: But Brooke, you of all people, with the pain and respiratory threats and paralysis you suffer, how can you even imagine that you ought to be primarily concerned with the sufferings of others, when yours are so great? Isn’t that what people would say?
Well, they can say it, Brooke answers. But I don’t think they’d be right.