Sunday, January 23, 2011

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. 

           

 

 

 

6 comments:

Marilyn McLaughlin said...

Wonderful. Can't wait to come cook with Brooke!

xxxoooo
Marilyn

Elisabeth said...

It's so good to read about all this progress. Inspirational.

Lorraine Seal said...

As I read through your account of progress, a picture flashed into my mind of Brooke at South Davis agonising over each breath off the vent last year -- or was it the year before? -- his whole being focussed on getting through the hour. And now this -- breathing off the pacer, lifting his leg off the bed, rolling into the kitchen to direct the cooking, making presentations and teaching. It seems wonderful in its own way.

I share your attachment to watching birds at feeders, by the way. We had all sorts of hedgerow and meadow birds at our feeders in Ireland. Here it is mainly blue tits and blackbirds that peck at the sunflower seeds and grain spread over the balustrade of our second-story veranda. And, of course, the bold black squirrels that I am tempted to chase away as they gobble the seed and suet. But then, they have to eat too, I remind myself as they gorge themselves.

We spent Saturday afternoon watching wildly costumed bands compete and then join together on the Baroque platz next to the Dom. The bands had come from German, Italy, Switzerland and other parts of Austria for Euro-Carneval, playing brass, woodwind and drums, their faces painted or wearing masks. The costumes were inventive and colourful, the music great fun as the crowd joined in. It's Fasching -- Carnival -- and apparently there's more wildness to come.

All the same, I wish I could come cook with Brooke . . .


love,
Lorraine

ed ranney said...

Brooke,

That's just wonderful news this week about the many activities you're doing, but also about improved movement, AND being able to scroll to read on your own - fabulous - and I'm so pleased you're doing another course, and have plans regarding humanities teaching, congratulations on all fronts!

It really sounds like the adjustment to being at home has gotten through the most difficult part, and it sounds like you have so many activities, that the sense of loss is steadily being replaced by ongoing interests, tasks to work through, and steady delights to enjoy - the fruits of incredible work and determination on both your parts.

With February on the doorstep, it won't be long before some sense of spring and regenerative activity outside will be greeting you - I bet you're already well aware of the longer days, the changing patterns of sunlight in your garden, and how the birds are reacting. Down here in New Mexico it's been very dry, with significant cold spells, but I can feel changes starting to show themselves, however subtlely.

Much looking forward to ongoing news, and a visit, postponed too long.

cheers and love to you both
Ed

Jean said...

Dear Brooke and Peggy,
Thank you for the enormous gifts you gave the board and staff of the Utah Humanities Council on Friday. Your reflections on how Shakespeare, Job, Thoreau and Plato have been with you on this difficult, difficult journey reminded me that maybe the worst thing any of us can do when facing anguish and pain, of any kind, is to think that we're alone. Your ability to draw from the deep well of the humanities underscored what a resevoir is available to all of us, as we go about trying to live our lives on this spinning earth. All I can say is thanks and thanks again.
Jean

David G. Pace said...

I really enjoyed your joint presentation at the Utah Humanities Council's Board Meeting on Friday held at the Calvary Baptist Church in Salt Lake City.

I have very limited experience with individuals who are in Brooke's situation. Like many, perhaps, I gravitate to the memory of the actor Christopher Reeve. What I liked about your presentation in which you talked in moving detail about how literature and philosophy--and the study of these humanities disciplines--was that they have given meaning and solace to you both.

The post-accident, public Reeves seemed more focused on the medical and physical aspects of his condition, including advocating for stem cell research and the possibility that he (and others) would some day walk again because of it.

Now I have a more nuanced appreciation of what it is like for Reeves, Brooke and others. It's not just about medical advancement and the physical, but about the spirit and how it takes a journey through harsh reality and thus potentially expands our notion of what it means to be human.

I'm saying this badly, perhaps, but I felt that your presentation helped me see my own existence in a much more philosophical and literary way. The story that we are continues and continues even while it is being revised, reshaped and transcended.

Thank you!