Heaven's Coast - Mark Doty [103]
But this morning the first voice on the machine is one of the town nurses from Provincetown. Wally has fallen, and couldn’t lift himself up again, though eventually he managed to make it to the phone. He couldn’t get himself onto the couch, couldn’t stand up. They’ve gotten volunteers from the Support Group to be with him, as the nurse feels he can’t be alone. When can I get home?
I post a note on my office door, a graduate student takes over my class; the students I meet on the way to the parking lot know what’s up by the look on my face, and they manage a graceful balance of expressing concern and staying out of my way. In half an hour I’m on the highway: Connecticut, Providence, New Bedford, Hyannis, home. All the way I’m clenched tight, holding the fear at bay, or sinking into it, crying now, before I’m home and have to manage things. Or imagining how, now that the apocalypse is here, I’ll do what needs to be done.
The first lesson is that just when we need help, a world of help appears.
Certainly there are aspects of the system of services for people with AIDS that are problematic. I dislike its sometimes coercive tone, the kit of conventional wisdom about how to cope, how to feel, how to live, and the offhand and overly easy way such wisdom is dispensed. What’s more annoying than bland consolation? (“Loss is hard,” one caseworker used to say to me, until I wanted to slap her for the banality of her utterance, and the intolerable contradiction between her statement and her cheery, “reassuring” affect.) But I can’t deny that, when a crisis comes, the system goes into extraordinarily effective high gear.
I’d gotten used to doctors—in Provincetown and in Boston, at the hospital clinic where we’d travel monthly, on trips which became increasingly arduous for Wally—who’d see us every few weeks for short visits which yielded nothing, or next to nothing. If there were no drug to offer, no chemical solution, then there was little exchange. And so it was surprising and wonderful, at first, to experience the difference when one dealt with people on the lower echelon of the health care system. A nurse came to visit at least once a week, and would do so for the remainder of Wally’s life, monitoring Wally’s vital signs, offering practical, useful kinds of suggestions about the day-to-day.
Even better were the home health aides. The lower one goes in the medical system, it seems, the more humanity, the more hands-on help, the more genuine care—perhaps particularly so when a disease is one the doctors and specialists themselves really can’t decipher. The gentle and patient people who will come and give a sick person a bath, rub his feet with lotion, or do the laundry and the dishes seem like ministering angels, the level of their involvement immediate, physical, engaged.
We can have this help for a few hours twice a day; what at first seems like too much rapidly seems necessary, as it’s fast becoming obvious that Wally’s not about to walk again, at least not now. He tries to use a cane, a little while, but it seems hardly any time before that’s replaced by the greater support of a walker.
Suddenly a confusion of people pours in and out of the house: a “primary care nurse” who’s in charge of Wally’s case, and various substitute nurses who appear in his frequent absence, a town nurse, a caseworker, a physical therapist, an occupational therapist—and the home health aides, of whom three or four come, on a rotating schedule which shifts from week to week.
Thus, a self-sufficient couple must suddenly let a host of people into their home. And a control freak must relinquish control. This isn’t easy; at first I’m hovering, and I know I’m hovering, trying to make sure the home health aides have everything they need, showing them where things are, where things go. But they must be used to dealing with the discomfort of new clients; they seem, most of them, expert at inobtrusively finding their way in our house, establishing their place,