For Brooke, life remains pretty hard. But some moments are good.
Today, for example, a Sunday, one of the last warm days of summer, he went for a walk (in his motorized wheelchair) with two of the young women who care for him, one an occupational therapist who works on his arms once a week, the other a nursing student who lives across the street from us and who, we’ve arranged, will be his half-time caretaker when he’s home.
They’re doing occupational therapy while they’re on the walk. The OT puts a cookie into his hand; he grasps it, even though his fingers have some contractures, then she helps raise his arm so that his hand is level with his mouth and near it, and he can put the cookie the last bit of the way into his mouth and eat it—in this case, a Lorna Doone. Then came a piece of melting chocolate—very hard to grab, especially since this time he was using his right hand, the one that’s seen so little activity. But he made it: melting chocolate, a fine reward. Then she helped Brooke write a birthday card to his niece Isabelle, just turning 15—he lettered “Happy Birthday Izzy, From Uncle Brookie,” and though the bottom part of the card is rather awkward—signs of fatigue in his hand—the first part is wonderfully clear. Awesome, she said. She never discourages; she always reinforces, and she would never, never say “never,” the way some other therapists have done. And she doesn’t act “never,” either, but exhibits the most extraordinary patience in working to eke out function in limbs that have been limp for so long.
But also along on the walk was our new half-time nurse, Julia, who is already hard at work learning absolutely all the details of Brooke’s care. Sometimes she’s here at the hospital in the afternoons, sitting with him while he does his trach mask breathing in the wheelchair; sometimes she brings him dinner; sometimes she’s here at 5 a.m., shadowing the nursing staff and being instructed in how to do bowel care. She’s wonderful. She too never discourages and always reinforces, and would never say never either. What luck to walk with these two!
Now Brooke and I are sitting together in his room in the early evening; it’s a tranquil moment, in which he says he feels completely relaxed. He had the wonderful company of friends this morning who brought him breakfast with 3 L’s-- a latté, leg massage, and love. To be sure, moments like this tranquil evening are still pretty rare, and there are moments of unmitigated non-tranquility—he still has temperature-regulation problems, and says that last night he was both cold and hot, so hot at one point that he felt “as if I were burning in hell.” But that subsides, and now we’re reflecting on what he has just called “moments of grace,” moments which are lovely in themselves, even in his compromised condition, and even in a hospital setting. He’s reflecting on the walk this afternoon, maybe half a mile up around the main hospital here in Bountiful, beyond the Alzheimer’s unit, where you can see turkey vultures soaring in the sky, riding the heat currents; get a sweeping, majestic view of the Great Salt Lake; or ride over Barton Creek, now ignominiously channeled into a cement culvert but still rushing with fresh mountain water.
The little trio on their walk stopped now and then under shady trees along the way to do a little more of the occupational therapy. Now he describes them: They are both “absolutely lovely, unpreposessing. One is wearing baggy blue jeans; the other a shirt with Japanese designs that she bought at Target, but both with lovely countenances, young women you feel absolutely comfortable with.” One works with Splore, a company that takes disabled people on trips—she’d just come back from a river rafting expedition in southern Idaho; the other led kayaking expeditions in Alaska this summer. They both love the outdoors; they both understand why Brooke wants to go on these walks so much, where even in the chair you can get some sense of the beauty of this extraordinary countryside. One grew up in Vermont and went to Smith, and skated on the same pond that Brooke’s sister skated on when they lived there; she’s 40 years younger, but when she says “Good job, Brooke” it breaks down the age gap totally. The other grew up in a small town called Palmer, 40 miles north of Anchorage, and at one point lived in a one-room log cabin with her mother and five sisters. She was a songwriter in Nashville and also went to aesthetician school, where she learned acupuncture and massage from a graduate of Johns Hopkins medical school; now she uses her massage talent for Brooke, with the most miraculous head massages.
But this account of today’s walk with these two young women is just one of many moments in Brooke’s life here at South Davis where he is enveloped in care. He remarked a moment ago, I’m here among a lot of women, and it is true—while there are many men among the nurses, aides, and respiratory therapists who treat him here, it is an environment of many women—gentle women, caring women, women who are young and those who are well-seasoned, some who are conventionally beautiful and many who are beautiful in personality, A very few are tough, anxious or bored, but Brooke works to know something of them all and they relax. What’s extraordinary in this environment is not just that there are a lot of women, but that he able as a man to be with women in a way not possible for any ordinary man. I watched a couple of weeks ago as three put him to bed: the nurse, the aide, and the respiratory therapist: one with the medications, one putting on his drop-foot-prevention boots and the hand splints he wears at night to try to keep his fingers from developing contractures, and one adjusting the ventilator. It was almost dark--no bright lights necessary for these familiar tasks--and they murmured gently among themselves as they did these things, enveloping him in this gentle, warm melody of care. They murmured, cooed, as women do, but that they don’t do when men are around. They didn’t need to be on guard or see this man as a threat, the way an able-bodied man might be seen; Brooke’s circumstances of complete vulnerability allowed him entrance into a world that would otherwise be closed. This isn’t a sexist remark, and the male nurses and aides here are also wonderfully gentle and caring, but they don’t murmur and coo.
There was a time more recently, Brooke says, when, half awake, he saw a nurse and an aide come in just at dawn, when it was still half dark in his room. They were standing above me, he says, taking the pillows out from under me where they’d been put during body-turnings in the night, covering me with a sheet that floated noiselessly over my legs with a slight refreshing breath of air on my face, and doing it with the most extraordinary skill, skill that reminded me of Japanese actors in kabuki theatre or the puppet players in bunraki movement (something I’d been talking about with the lama, who teaches movement at the University, when he visited again recently). All that I could see of these two figures were their profiles in the semi-darkness. They moved with such skill, piling the pillows and billowing out the sheet that it gave me the most extraordinary pleasure, watching something that was essentially a dance without being deliberate or performed for an audience--two people who had no idea they were dancing and weren’t trying to be graceful, but it made the best dancing of all. It’s what Yeats wishes for his daughter in Prayer for my Daughter, beauty that’s beautiful because it’s not conscious of its beauty. In circumstances like Brooke’s, these small reprieves are moments of grace.