Turning Points

             Coming home involves a sense of loss, but also a sense of gain.  First, and most obviously, it is a remarkable achievement for someone with Brooke’s severity of injury to come home at all.   In exploring home-care companies some time ago, talking with maybe half a dozen different ones, Peggy was at one point flatly told, “Well, people with injuries like that don’t usually go home.  Mostly they just put ‘em in long term care.”   Peggy remembers thinking, but that’s a person, that’s Brooke, he doesn’t want to spend the rest of his life in long term care.

           

            In fact, many things are going really well.   Brooke’s just about to begin teaching another OSHER class, this one on The Winter’s Tale: there’ll be fifteen students in our living room, once a week, and the text of the play and scenes from the Royal Shakespeare Company production can be flashed on our big new TV screen.   We’re planning to give a talk this Friday for the board of the Utah Humanities Council—the idea is to explore the role of the humanities, especially philosophy and literature, but also of the great texts of the intellectual tradition, in the way we’ve been responding to our new situation.  We each taught a section of the same general-education/Honors course, Intellectual Traditions of the West, when we each first arrived in Utah—that was fall, 1975—and our ongoing absorption in these texts has made a great deal of difference to us.  There’s other good stuff: our wonderful staff has  smoothed itself out, not that there aren’t occasional lapses, and there’s a real sense of common purpose—this dozen people call themselves TeamBrooke and work that way.  Meanwhile, we’ve acquired five new bird feeders that are placed strategically right outside our big living room windows, and we are seeing junkos, finches, house sparrows, chickadees, goldfinches, and a redheaded downy woodpecker who is working singlehandedly through a big hunk of suet.   We’ve  been adopted by a big, sleek, gray cat, who comes to sit on the railing of the deck near the birdfeeders but as far as we know is still emptyhanded.   Brooke is graduating from the home care company’s therapists and moving on to outpatient treatment, in particular physical therapy at Neuroworx and occupational therapy at the University of Utah—both excellent programs.  (He’s going for intake evaluations this week.)  There are little delights: our trusted auto mechanics at our local gas station, who’ve serviced our ancient Honda and Isuzu for many years, are also game to take on our giant accessible van, even though it can barely squeeze into their service bays.   We went to a blues concert a week ago, held in a Unitarian church; we knew all the players in the band, Better With the Blues, including our pediatrician friend who played Amazing Grace for Brooke on his first outside excursion when he was still in the IMCU at University Hospital—there’s a picture of Lou with his harmonica and Brooke in the Cadillac chair, in the parking lot of the hospital, two years ago, only a couple of weeks after the accident.   There’s been talk of a documentary about Brooke.    A group of Honors students is coming to have a class with him.  Physically and psychologically he is improving steadily—almost no more anxiety, depression just in very short episodes, less disorientation and confusion, increasing intellectual alertness, and a much greater sense of wellbeing and direction—plus continuing physical gains, including muscle activity in both legs and both arms, even both hands and both feet.  There’s some muscle activity virtually everywhere, though it wouldn’t count as function yet, but it does give one a sense of purpose and involvement.   He’s moved from the 16 breaths-per-minute pacer to one with an 18 bpmsetting for most of the day.  He can carry on longer and longer conversations, virtually all day.   We haven’t been focusing on breathing off the pacer, but he can do it, and did it for a casual hour just yesterday—while doing his speech exercises, demanding enough in themselves.   A good friend is teaching him Dragon Naturally Speaking, going about it in the most thorough of possible ways—researching whether the PC version or the Mac version is better, what all the shortcuts are and what the underlying architecture is.    After two years of being unable to read anything on his own, he can now scroll through a play like the Winter’s Tale at his own speed, pausing over Shakespeare’s extraordinarily difficult language.   Meanwhile, there’s way better bladder control.    Brooke is even starting to cook again, at least in the sense that he’ll roll into the kitchen and direct folks in how to make whatever’s in his mind—there are a lot of willing sous-chefs whose hands do the work while Brooke does the culinary thinking.    (By the way, we hope you’ll come and cook with Brooke—just bring whatever you like to make and make it together with Brooke while you’re here--)  Of course there are sharp points of anguish:  pain, of course, from time to time.  The sharp-shinned hawk that swooped down on a terrorized finch at the feeder the other day, and tore it to shreds as Brooke and his caregiver watched.  More painfully, Roger, our friend with ALS who visited us frequently while Brooke was still at South Davis, has died: he suffered through many similar stages of paralysis and loss of function as Brooke, but he was going downhill, Brooke slowly up.  We miss Roger tremendously, and it is hard, when your own life is difficult, to see someone for whom it is worse.

            But Roger’s pain is over now, and Brooke’s is improving.  Brooke’s gaining strength both physically and mentally, and though we have also been exploring the darker sides of loss, being at home is good.   Besides, he lifted his left leg at the knee a full three inches off the bed today—that’s against gravity—and has done as many as 200 arm pulls on the railing at the side of bed.    We’ve always known that progress was slow, but this is progress again, even after all this time.