Brooke returned from University Hospital in the middle of the afternoon a week ago—a relief to get out, he said, although he also said at the end of his stay that it had been by far the best place to be. The next day was his 69th birthday, and although his sister had knit him an elegant scarf, it was a birthday we could only celebrate in the most minimal way. Too much respiratory challenge; too much working with the home IV antibiotics; even too much oxygen around the house to have any birthday candles. Our daughter Sara was here, a wonderful support, but even with her and her calming presence recovery from pneumonia (which is what Brooke’s problem turned out to be) is agonizingly slow. Your need a lot of rest to recover from pneumonia, and Brooke hadn’t been getting it over the weekend; it was too exciting to be home again.
On the roughest of the days after he was home, Brooke was extraordinarily short of breath and could hardly sit up to eat. He had to go back on oxygen during the day, not just at night. In addition, he’d been still seriously troubled with a painful leg, pain that moves between his hip and his knee, apparently due to a muscle that knots on the backside of his thigh and old trigger-points and injuries that reactivate as his leg muscles become more active. We don’t mean to be complaining here about how difficult and slow recovery can be, since after all it is recovery. Pneumonia for someone with Brooke’s challenges is a real risk, something we have to take seriously. Part of recovery involves understanding how important it is to rest, but more than that it’s about treating one’s own body in a way that balances the need for rest against the need for activity.
But today, he’s feeling better: he needs less oxygen; he’s obviously stronger, and he can eat in the normal, sitting-up way. To be sure, he’s got a huge amount of pain going on, but he’s often able to ignore this, so much experience has he had over the past two years with pain. But perhaps the most difficult part is the psychological pain of setback: he’d come so far at Neuroworx, working on trunk strength and in the pool, but after this period of inactivity it seems that he has slipped back many steps in the process of getting stronger. Of course, he’s had pneumonia before, twice in fact since the pacer was installed, and one of those times very severe, much worse than this one. It is sometimes hard to remember that one has gone through the same pattern of experience before; doing well, sailing along, then blam! blam! Blam! Pneumonia again. Not to be melodramatic, but it’s blam, and it seems, at death’s door.
But now it’s the beginning of April, the barely observed birthday is over, it’s spring, and things are beginning to look up. Crocuses are coming up in the yard. Ironically, it’s the leg pain, unrelated to everything else except perhaps positioning in the wheelchair, that is the most agonizing—and it is agonizing, though it doesn’t occur every day. Then there’s discovering and holding onto the notion that there’s some pattern—you go through something like pneumonia, but each time, you go through a very long period of recovery, longer than the disease itself; but recognizing the pattern actually helps. There is one huge compensation, however, and that is that we now live in a house full of love.
A house full of love? This phrase just slipped out on that worst of days after Brooke had come home when he was talking with his psychiatrist friend; they were talking about home life, and this phrase just formed in Brooke’s mind he said and slipped out before he even could think about it. But consider: we have twelve people helping us, our various employees; they work in shifts of greater or lesser extent; they’re here around the clock, 24/7. Some of them have known one another in different contexts—they’ve been classmates in respiratory therapy school, or classmates in nursing school, or in high school, or are friends of friends, and some are folks we just chanced to meet in some inexplicably random but fortuitous way. But they’ve been coming together as a team, and even though they aren’t all here at the same time, they overlap in shifts or do double shifts or trade off with one another, and the night people meet the daytime people when they change shifts at 7 am. They also meet each other at the all-staff inservices we have every six weeks or so to consolidate the training the staff has in all the aspects of Brooke’s care. They’ve come to know each other; they help each other; some cook together; sometimes they bring their dogs; they begin to care about each other; and not only does one of them already live just across the street but another is moving into a house she’s renting just two doors up. The little frictions that sometimes form among all these people with their different ways of doing things, which emerged after the honeymoon when Brooke was first home was over, have been dissipating, and they now form a sort of community, a kind of extended family, a sort of village one might say, engaged in care for Brooke. They support each other in their growing affection—that’s the only thing you can call it—for Brooke.
With this pneumonia, Brooke’s been pretty sick. The irony is that the harder things are for Brooke, the more palpable this sense of love among the caretakers becomes. And it’s not just the caretakers, Brooke says, but all the friends who come to talk, or read, or just sit. Some have done so for the past two-plus years. Some come to work on computers, or to help with e-mail. Some come to read poetry, or plant flowers, or help me think about my upcoming course on the Iliad. This reinforcement really helps to keep one alive.
What would happen if I were this sick and there weren’t such reinforcement, asks Peggy. (She’s always asking these probing questions.) I don’t know, says Brooke, I have no idea, maybe I would have to try to starve myself, though they’d try to keep me alive; but I know I couldn’t stand it without this reinforcement. I couldn’t stand it. But then I couldn’t have gotten this far without all the support I’ve gotten over the past two and a half years—I feel obligated to keep living, in a way, aside from the will to live. I don’t honestly believe that that will would be strong enough to counter the pain, if there weren’t such support. The loneliness would be overpowering; I’d have to have a level of religious belief or something like that to survive, if I didn’t have these real people and their love with me; I’d have to have some kind of religious belief to go it alone, because the pain is sometimes really unbearable. I’d need more than what I’ve got, if I didn’t have these caregivers and these friends and my wife and family too.
A day later, Brooke continues, I’ve been having a few thoughts about what it would be like to go through this absolutely alone, as many people in fact do. To be really alone doing this, you’d have to be in a hospital in Moscow, say, or some very distant and alien place where you couldn’t speak the language. But I think I’d have to believe in Heaven or some other dimension of reality, where I didn’t have any right to let go of my life if I couldn’t stand it anymore; not being even able to do that would be the negative part. You’d have to believe in some place where going through this would be rewarded in some way. Because not to have people around who really cared about you you’d have to dig so deep, it’s hard to imagine how that would be possible. Of course, there are people who live in solitary confinement for years, like Robbin Island or Insein Prison or hellholes everywhere in the world, where they’re beaten and tortured every day with no hope of escape; these people are genuine heroes, and it’s beyond my capacity to imagine what they go through. Compared to their existence, mine seems rich. After all, what’s actually going on here, though I’ve been for the most part confined to the house while I’m still recovering, is a pretty extraordinary phenomenon, and it does compensate in some measure for the paralysis and pain that I experience on a daily basis. I see so much growth and change in the people around me who form our staff, much of it from contact with each other as well as from contact with somebody in a compromised situation like me--all of it for the better. I find them all interesting; I care about them too. Imagine, a house full of love. How many ordinary people live in houses like this, where you can almost feel it in the walls? Of course it isn’t like this all the time, sometimes it’s just ordinary everyday, and working here taking care of me is just a job, but especially right now while I’m still recovering from this pneumonia I can really feel what this ubiquitous care, this emerging love, does for me and for us all.