Monday, November 14, 2011

Here's the article

Utah professor’s odyssey brings him home to new joys, new pain

On a recent Monday, Brooke Hopkins — seated next to his mother’s piano and across from the red-and-black wedding tapestry he bought in northern India — engaged a dozen retired professionals in an exploration of Odysseus’ homecoming.

It was the culmination of Hopkins’ continuing-education class on the Greek epic The Odyssey and its mythical hero’s two-decades-long adventures and ordeals until he could return to his beloved’s arms.

The retired University of Utah English professor’s own unexpected odyssey began three years ago today — on Nov. 14, 2008 — when he collided with another bicyclist while riding in City Creek Canyon and broke his neck.

Unlike Odysseus’ Penelope, however, Hopkins’ beloved, Peggy Battin, has been by his side at every turn.

Essentially paralyzed from the neck down, Hopkins spent the first three months at University Hospital, and the next 21 months at South Davis Community Hospital in Bountiful. It took that long to wean him off the ventilator and get him breathing on his own.

After seesawing back and forth between hospital and home last fall, Hopkins finally was able to settle into his familiar Avenues abode in the beginning of December 2010.

Since then, he has endured a rigorous six-days-a-week program of physical therapy, daily medications and slow, arduous development. Meanwhile, Battin, a nationally recognized medical-ethics expert, has had to juggle the schedule, deal with insurance and medical-supply companies, manage a veritable army of people in the house and maintain her own teaching schedule at the U.

“It takes an enormous amount of will not to be bothered by misplaced items and small annoyances,” Battin says. “But all the staff is really sensitive to these issues and tries really hard.”

As a welcome respite, Hopkins has taught classes in his home for one of the U.’s adult-education programs: Henry David Thoreau’s Walden, Shakespeare’s Winter’s Tale, The Iliad, and now The Odyssey, as well as a couple of informal minicourses on the lyrical ballads of Coleridge and Wordsworth and Shakespeare’s sonnets. He has ridden in a blue van to the Utah Symphony, to the Oasis Cafe, to friends’ houses and to Red Butte Garden. He has “hiked” (via wheelchair) up Millcreek Canyon, sailed on the Great Salt Lake, even journeyed to the new dinosaur museum in Vernal and the Utah Shakespeare Festival in Cedar City.

But Hopkins, who will turn 70 in March, also has faced constantly morphing nerve pain and continual adaptation to a restricted life. At times, it has seemed unbearable.

He copes, he says, with the help of his wife and his caregivers, a dozen youngish people with an array of medical skills and personal backgrounds whom he would not likely have met without the injury.

“There is a great deal of love in the house,” Hopkins says. “It is very reciprocal and makes all of us very happy.”

Frankly, he says, “we’re kind of like a family.”

The highlight of his days, however, is lying on the bed by his wife, talking into the night. Together they have nearly completed a jointly written book about the aftermath of Hopkins’ accident, what it has meant personally and how to think about it ethically and emotionally.

They call it a “fused voice” effort.

Slowly expanding universe • At South Davis, Hopkins was largely stuck in a single hospital room. “A nice space,” Hopkins says graciously, “but a very enclosed life.”

Now he can roam around the first floor of his historic home at will, driving the chair into the kitchen — where he was always the cook — to supervise meal preparation, into the living room to greet friends or out to the deck to watch hummingbirds land on the feeder.

“My home is beautiful and quiet,” he says. “I love the Avenues and having friends over.”

It takes, however, all dozen staffers with overlapping shifts in a carefully choreographed program to manage Hopkins’ care.

Consider his morning routine.

He awakes between 6:30 and 7, then two staffers get him out of bed, help with bowel care, lung clearing, bathing and dressing. The whole process takes about an hour and a half.

It’s the same at bedtime.

Two days a week he goes to occupational therapy at the U. to work on upper-body strength, including the ability to use his hands to feed himself or brush his teeth, both of which he can do with assistance.

The other days he goes to Neuroworx, a therapeutic facility in South Jordan, for two hours or more of stretching. He does, he says, “endless kinds of exercises to strengthen legs, glutes, hamstrings, feet, lower back, arms and trunk.” One day a week, he works out in Neuroworx’s pool and another day he is put into a “standing frame” for 45 minutes to put weight on his legs and improve his bone density.

All this therapy has produced incremental progress and greater physical strength, which, in turn, have improved his mental and emotional health.

As to the possibility of his someday walking, Hopkins and Battin don’t even talk about it.

“It’s always a dance between what is hoped for — which would be full recovery — and what turns out to be possible,” Battin says. “That can’t be predicted at the beginning yet requires continuous pushing against what seems to be limited.”

Ironically, though, increased sensations and movement have magnified Hopkins’ chronic discomforts. In short, his pain.

It is excruciating, for example, to have his lungs suctioned or to sit for long periods in his chair, which pinches the sciatic nerve in his hip and shoots a charge down his right leg. He no longer has an internal thermostat to control his body temperature.

“When you get cold, you remain cold for hours and hours and hours,” he says. “It is deeply unpleasant.”

Such constant and immobilizing agonies can “wear you down emotionally,” Hopkins says. “But you just live with it.”

Still, he recently bought a Buddha statue with money his poetry students gave him. And, whether he is looking at it or not, “it creates an aura of equanimity I try to achieve.”

Embraced by optimism • Despite Hopkins’ regular and ongoing pain, he has reasons to hope.

Neuroworx is one of only a handful of clinics across the country that specializes in continuous therapy for spinal cord patients. The atmosphere there exudes boundless confidence in progress.

“The general notion is that you never, ever, ever give up,” Hopkins says. “You always move forward, no matter how high your injury [on the spine]. No matter what anybody tells you, you are always going to improve, even after 10 years.”

And then there’s the joy of teaching.

Hopkins has chosen works he has studied and taught throughout his career, but this time it’s different. No going back to a particular page. No turning sheets. No underlining. “Now I have them all in my head because I’m listening to them,” he says. “I’m underlining in my head.”

Hopkins’ father was a banker, not a literary scholar, but after his retirement, the senior Hopkins taught French history from the medieval period to the Renaissance to a group of his friends.

“It’s odd,” the son says, “how my own life has followed his.”

And so Hopkins’ living-room classes will continue. Next Virgil’s Aeneid, he says with delight, then maybe Dante’s Inferno and on and on into the future until he can’t do it any longer.

Three Years, Exactly

It's been three years, exactly, since Brooke's accident. The Salt Lake Tribune has been following his odyssey (an appropriate term, since he's been teaching Homer's poem this fall); here's the link:

The photo that actually appeared on the front page of the print edition has been cropped to be a good deal more modest, but it still has that same Brooke-like expression as he works out in the Neuroworx therapy pool. We'll try to post the full text as soon as we get it, but the link above should take you to the web version.

Things are pretty good, considering, after three extraordinary (in every sense) years.

Brooke & Peggy

Wednesday, October 12, 2011

Art vs. Nature

            At the zenith of The Winter’s Tale, the wronged queen Hermione, believed dead by her once pathologically jealous husband the king Leontes, is revealed on the stage as a statue of herself.   In the production staged by the Utah Shakespeare Company, the statue of Hermione is presented in a completely spectacular way, standing erect and motionless beside a pedestal, clothed in the white of innocence, her pale hair and face made luminous by a direct flood of light overhead.  She stands as still as the marble of which she is believed to be made, as Leontes gradually comes to see how lifelike she is, how the sculpture is so real as to seem to breathe, as his full repentance is expressed in his overwhelming desire to see her alive even though it was he who had condemned her to death.  But then she moves, ever so slightly; she lowers the arm that had been resting on the pedestal, her face shows the dawn of a smile, and she descends slowly into life and into the embrace of her transformed husband.

            It is as a magical a moment as the theatre can offer.   This is perhaps Shakespeare’s greatest statement about the relationship between art and nature, as perhaps the highest work of art, the statue of Hermione (attributed by the participants in the unfolding drama to a famous Italian sculptor), is, however, revealed as a living, breathing human being,  the creation of a power of even more completely consummate artistry.   And it is among the most remarkable moments a viewer of the plays of Shakespeare can hope to witness, especially when brought to life in such a superb performance as this one.

            This was a high moment for both of us, especially for Brooke, who a decade ago published an essay on The Winter’s Tale and who’d taught a full course on that single play last winter.  It’s his favorite Shakespeare play, the one that means the most to him.  And when we’d learned that the Utah Shakespeare Company would be performing it this fall, he decided he wanted to see it.


            That seemed completely impossible.  The Utah Shakespeare Company performs in Cedar City.   That’s a four-hour drive south from Salt Lake, straight down the interstate that goes through Provo, Nephi, Fillmore, almost all the way to St. George and out the bottom of the state.  But a four-hour drive is a challenge we didn’t know whether Brooke could meet, since veering in and out of traffic and hitting road-bumps make spasms more acute, since frequent stops are necessary, and there’s the whole problem of staying in a motel when you get there along with all his transfer apparatus and respiratory equipment.   We practiced a couple of weeks ago by going to Vernal for a night, a town about three hours to the east where there’s a new and interesting dinosaur museum near the famous dig sites, but that was easy compared to this trip.


            Here’s a list of some of what we needed for this trip (we keep this on our computer):






            at the moment, requires two trained caregivers



            Care logs

            Medications logs

            Reservations, tickets

            Addresses, directions, etc.

            Contact information for physician, staff, etc.



            Regular meds + 1or 2 extra days, just in case

            PRN meds:  Klonopin, Baclofen, Midodrine, Advil, Norco, etc.

            Bacitracin antibiotic ointment

            Suppositories, etc.



            Diaphragm pacer box and extra batteries

            Ventilator and charger

            Cough assist machine and charger

            Suction machine and charger

                        Extra sucky bucket

            Backup ballard, cap

            Flutter valve


            Oxygen tanks (just in case)  + nasal cannula

            Inner cannulas

            Trach sponges

            SAT monitor




            Blood pressure cuff

            Dressings for pacer site


            Baby monitor and powercord

            TENS unit and pads


                        Toothbrush, paste

                        Razor, shaving cream



                        Go-betweens for teeth

            Hand splints

            Anti foot-drop boots for night



(take enough for extra days, just in case)

            straight catheters

self-contained cath kits




            blue pads

            yellow pads


            male guards


            garbage bags


            XL gloves or plastic cups for voluntary voiding





clothing protector

hand gel

breakfast food

            Be sure to take straws along all the time.



            tearaway pants


            longsleeved shirts


            gown for sleeping


            outdoor jacket



            Theraband for knees



            Wheelchair charger

            Portable overhead lift (note: 65 lbs.)

            Motor for lift, plus powercord



            Ramps: 3’, 5’

            Foam wedge for bed

            Tape, CD player, tapes, disks

            Headphones and iPod


Heating pad

            Water bottles

            Mister, spray bottle if weather is hot

            Surge protector, power strip

                        (very important for hookups in hotel room)





            Bug repellent

            Camelback or equiv.

            $$$ cash money

            laptop and powercord

            stick drive

            cellphone and powercord



            Power bars


            Big umbrella  (good for sun, too)

            Camp chairs


            Picnic stuff, cooler, water

            Have cathing, suction equipment, etc. handy at all times





It’s a lot of stuff, especially for two people who’ve hardly ever checked any luggage and have been happiest when traveling lightest, but we managed to fit it all into the van.  And we managed thanks to the help of the two caregivers who went with us and a pair of friends who also accompanied us.   Here’s the important part: We saw the play.  We saw the play.   Imagine.

Then we had a quite delightful dinner in very nice restaurant, new in Cedar City, with some friends associated with the Shakespeare Festival.   It was almost like real life, except of course for the wheelchair, the everpresent caregiver trained in respiratory support always at Brooke’s side, and the almost but not quite always everpresent pain.  Just the same, we saw the play, though as recently as a couple of months ago we wouldn’t have believed it was possible.

            The next morning, when Peggy came down from a brief hike in the early-morning chill in the foothills above the town, wearing a bright red jacket to distinguish herself from the elk and coyotes the locals were hunting, she found Brooke reclining rather happily in his chair, basking in the sun.  We’d stayed in an extremely modest motel those two nights because it was the only place we could find, a motel so modest that it counted thin coffee and a packaged donut as breakfast, didn’t provide shampoo, and offered to clean your room but obviously hoped you’d say no.   Its grounds consisted entirely of a walled-in, completely paved parking lot, not a tree or a blade of grass anywhere.   But, sitting with Brooke, we could see over the wall to the foothills and the first snow of the season on the mountains beyond, and the sun heated the asphalt pavement enough so that you could almost bask in its warmth. This isn’t like basking in the sun in St. Tropez; it’s the parking lot of a really cheap motel in southern Utah.  Just the same, some small pleasures have become way bigger than they ever were before, even just seeing the mountains over a wall and feeling the touch of the late-season sun.


            We took the long way home, avoiding the interstate in favor of an empty, two-lane road to the west, Route 130 at first and then other equally obscure routes, out through the basin-and-range country.   The road is so straight for so much of the time that you notice the few curves when they come.  The emptiness of this road—almost no traffic, no buildings, no billboards or signs, hardly any evidence of farming and barely even any cattle--this emptiness is what gives us extraordinary pleasure, that utter emptiness, that landscape we’ve driven around in so much in the past.   We’d explored that empty territory for hot springs, for obscure mountain ranges to hike in, or for little abandoned towns or isolated ranches where you might always meet someone with an entirely sense of the land.


The landscape is almost perfectly flat, with low mountain ranges every fifty miles or so stretching to the west—ranges like the Cricket Mountains, or the Confusion Range, or the House Range, mountains almost no one from outside the small circle of west desert aficionados have heard of.  We drove through partly boarded-up towns like Minersville and Milford.  Normally there isn’t much traffic in these towns anyway, but since it was Sunday and, we assume, nearly everyone was either in church or out on the elk hunt, no one was in the streets, no cars were on the road, there wasn’t any movement anywhere.


During the drive north to Delta, Brooke said, he wondered on occasion whether he wished he had brought a book on tape to while away what would turn out to be an eight-hour drive, but every time he wondered it he dismissed the thought when he realized how much sheer pleasure came moment-to-moment just looking out at this richly empty landscape:  vast expanses of late-fall desert grass and sagebrush, an almost colorless dried-grass brownness.  This is nature.   These are places most people wouldn’t consider worth looking at for a second, but there’s an extraordinary calm that comes with them, as if the sediments that had settled in between the upended crustal blocks that formed the mountains during the emergence of basin-and-range topography had conveyed to us as we traveled over them their sense of geologic repose. 


            In the old days—that is, before the accident—we used to pursue a running argument about Art vs. Nature.  We played with an evil-genius argument, like this: Suppose there were an evil genius capable of arranging things this way:  He could transport you to any art museum anywhere, or concert hall, or theater, or library full of superb literature:  you could see the Mona Lisa (without the hordes of visitors or protective bulletproof glass) or the Parthenon, or the Ballet Russes, or to a reading by the extraordinary poet W. S. Merwin (whom Brooke just heard here in Salt Lake), or whatever you wish of art; or this evil genius could take you to any natural environment anywhere: to  waterfalls, to lush tropical forests, to astonishing rock formations, to seacoasts, anywhere in nature.   But not both:  that’s what makes him an evil genius, that you have to choose between art and nature.    We’ve had a lot of fun over the years playing with this thought experiment, never able to decide for one or the other, a life without art, or a life without nature.  But this little trip to Cedar City brought us both, just when we hadn’t been sure either would be possible:  a spectacular performance of the most sublime Shakespeare, and a view of such enormous natural expanse that it changes your sense of living on this planet and almost takes your breath away.



            You might think we’re getting back to normal, sort of.  But actually, we’re seeing more in our world than ever before.   Once again, this is one of the paradoxes of Brooke’s injury: it has brought both of us an even deeper appreciation of both art and nature, something we can’t take for granted anymore.  As we write this, we’re looking out our living room window as orange-red light from the late-season setting sun illuminates the trees, trees framed by our Craftsman-vintage windows, and it almost looks as if we’re seeing a painting of a magical but completely evanescent moment in nature.




Wednesday, August 10, 2011

Catching Up

Several nights ago I was talking to a friend whom I hadn’t seen for awhile, and I offered the following summary of what I am feeling at the current moment, two and three-quarters years after my accident. The gains are beginning to catch up with the losses. I am not sure at this moment whether they will ever overtake them, but eventually there may be some kind of balance. I said this to my friend because a few days before, while I was riding home in my wheelchair in the van, after a trip with two of my caregivers, I suddenly and somewhat inexplicably began to feel as if the situation I was in could in fact be more of a gift than a defeat of all that I thought I would be at this time in my life.

We had just been on an outing with the six-year-old daughter of one of the caregivers to an absolutely beautiful arboretum, Red Butte Gardens, near the University, watching the child play in the fountains and wondering at the colors and shapes of the flowers around us. A day or two earlier, I had gone out for lunch to a restaurant for the first time, a Salt Lake fixture called Oasis, and wandered around (in my wheelchair) in the adjoining Golden Braid bookstore looking for a statue of the Buddha, something that was to be a gift from my class on Wordsworth and Coleridge’s Lyrical Ballads.

There it was. A statue of the Buddha that seemed to convey the equanimity I have been searching for. It was high up on a shelf in the bookstore, mixed in with all sorts of counterculture and occult paraphernalia, so it was a little hard to tell that this figure was exactly the right one, the one I’d been looking for, but when we brought it home and found the right niche, slightly veiled by plants on a low table, it seemed exactly right. Equanimity. What I’ve been seeking.

Life will never be the same. We know that. But nobody’s life is quite the same, as time goes on. Ours, fortunately, is getting better, from its awful lows. A night or two ago, we went out for dinner at the home of some friends—this was the first time we’ve been able to go to a private home. It’s a challenge: almost everyone’s house has stairs, both at the entrance and sometimes inside, not navigable in Brooke’s giant wheelchair. Our hosts, Tom and Christiane, had been working on this for weeks, measuring the width of their doors, the height of the steps, keeping their fingers crossed that the weather would be good, because the only place in their house we thought we could reach would be the big back porch. Of course, this was a treat: the weather was cloudless and the porch overlooks the entire city.

The porch offers a frontal view of the Utah State Capitol, a replica of the one in Washington, and of course prods you to think about the political maneuverings that go on inside it. But we avoided political discussion altogether—astonishing, given how disturbed we’ve all been by recent events—and turned to something deeper. We were talking about things you wish you’d done in your life but hadn’t, and at first this turned to trips—“We wish we’d gone to Vietnam. We wish we’d gone to Patagonia. We wish we’d gotten to somewhere in Africa”—but then turned to kinds of things we wished we’d done that don’t require locomotion. What kinds of mental things did you always want to do but never got around to?

Someone said something about being liberated, now that their children have grown up and they’re free to travel, to do anything, but then went on to explore artistic and emotional roads not taken. This notion of liberation touched something in me, the stark disparity between being paralyzed, being confined to a wheelchair and unable to go most places, to travel any great distance, to do most physical things, and a certain liberation of mind or spirit, if you can call it that. We’ve written about this earlier, but it came home more fully to me that night, sitting on that big open porch looking out at the city. I thought again of Coleridge’s great poem “This lime tree bower my prison,” in which the poet begins by expressing his anger at being confined because of an accident:

Well, they are gone, and here must I remain,

This lime tree bower my prison! I have lost

Such beauties and such feelings, as had been

Most sweet to my remembrance…

His friends have left him in his garden and gone out walking in the countryside; he can see them in his mind’s eye, descending from a ridge into the narrow, shaded, fantastic glade of a streambed, and he cannot go with them. But he discovers something new, even as he imagines where they are, climbing up again, gaining a view out over the land, seeing the sunset. It’s a joy in their joy: they can see these things, even though he cannot.

But it’s not all altruism, self-sacrifice, that they are having these experiences while he cannot. There are new experiences for him too, of a sort far more fine-grained than he would have had walking in the countryside:

A delight

Comes sudden on my heart, and I am glad

As I myself were there…

…have I not mark’d

Much that has sooth’d me. Pale beneath the blaze

Hung the transparent foliage; and I watch’d

Some broad and sunny leaf, and loved to see

The shadow of the leaf and stem above

Dappling its sunshine! And that walnut-tree

Was richly ting’d, and a deep radiance lay

Full on the ancient ivy, which usurps

Those fronting elms, and now with blackest mass

Makes their dark branches gleam a lighter hue

Through the late twilight…

I’ve read and taught this poem so many times but now realize of course I could never have fully understood it. I never thought I’d be in a situation anything like Coleridge’s, and of course my accident was much more serious and permanent than Coleridge’s, but there’s something here that allows me to see what a great poet has been able to see, to understand, in a situation like this. This is an uncanny experience, but in a way my whole life is an uncanny experience, with resonances to many earlier parts of my life and the literary works I have taught, but at the same time entirely strange and new. We’ve written about this poem and this experience of confinement and liberation before, but it continues to have new meaning, new reality, new depth. Peggy says she has a sense of complete calm too, at least most of the time, when Brooke isn’t in pain; she too is looking in new ways at the shadows and dappled light on the individual leaves in our bower here. Are the gains catching up with the losses? Is this the mental thing you always wanted to do but never got around to (as if it were that simple), something close to achieving equanimity?

Peter Mathiessen’s tale of a Buddhist monk in Nepal also comes to mind, as least as I remember it from a reading he gave here in the late ‘70’s; it’s been with me that long. The monk is old and no longer nimble enough to climb down from the cave on a high mountain ledge where he has been living. He is trapped, at least as we might say. The monk looks out from the ledge and sees the mountains and valleys around him, knowing he will die there, will never get down. His response to a visitor’s question about whether his situation is painful for him is this, It’s beautiful, especially since I have no choice.

Sunday, July 17, 2011

Epilogue (for the time being)

We’re beginning this epilogue (an epilogue for the time being, that is) on the 6th of July, 2011.

This is Brooke speaking. We are now well over half a year into our return home. The winter, of course, was rather difficult for all the reasons one can imagine. It was cold, hard to go outside; it was cold-and-flu season; it was hard for some of our caregivers to get here; and as you know from reading this account, adjusting to home life has been, well, somewhat traumatic. It was actually a lot easier than some people suggested it might be, but still a challenge. Also, the spring here has been hardly a spring at all, and because it rained almost every day it seemed during May and even parts of June, there wasn’t any of that rich sun that makes summer seem appealing.

“Now, though,” Brooke continues, “we’re beginning a summer routine that hopefully will last three or four months…”

Peggy interrupts. “What would the lama say?” she objects. “Why should we be worried about how long summer will last? Isn’t that to violate that basic Buddhist principle of living in the moment that we’ve found so deeply helpful in dealing with these difficult circumstances?--Don’t anguish over the past and what you’ve lost, don’t worry about the future and what hardships it might bring; just attend to what’s right here, right now.”

Brooke says, I’m looking through the trees. We’re sitting on the deck after dinner; the sky is just beginning to darken and a sliver of moon to brighten; there’s a robin on a branch in the tree above us, singing—even in the evening. The moon is almost halfway and is beginning to set to the west. That bird is still singing, though from a greater distance. The air is cooling—it must have been 90ยบ during the day today but always drops precipitously here at our elevation, almost a mile high, so it’s now cool and delicious. The bird sounds are coming from a distance. We have a hybrid maple in our yard planted by the previous occupant of this house probably fifty years ago; it has angled branches that evoke those of a Japanese painting, as if these branches had many elbows. The tree is old enough now to have lichen on it. When we bought this house thirty-four years ago, this hybrid maple was maybe 30 feet tall; it was young and energetic; it’s an old, matured tree now, with some dead branches among the green; we’re learning to like even these, because the squirrels and certain birds seem to love them.

Meanwhile the grapes are growing. You can’t hear the grapes growing, any more than you can see grass growing, but they are, growing in bunches. The pole beans planted a month or so ago have sprouted and are reaching early adolescence; they’ve just developed tendrils overnight that hook onto poles and allow them to careen upwards. It’s just past sunset here, but the clouds above are tinted pink in a way that Brooke says reminds him of a Gerard Manley Hopkins poem, not quite the one called ”God’s Grandeur” although that’s the point, a poem called “Pied Beauty” that goes something like “praised be dappled things.” Of course there are far more spectacular sunsets to occur here and elsewhere, and we’ve experienced many of these in distant places as well as here, but this one is spectacular to us. The lichen on the hybrid maple is somewhere between orange and brown, more brown as the light goes down, but it’s not the color that matters but the texture, something like an extremely soft cloth that covers some parts of some of the branches of this rare tree, one part in particular that stretches from the first crotch of the lower branches to just underneath the crown. We’re hearing the last of their songs before the birds retire for the night. The moon, a gibbous crescent, is being veiled by clouds.

We live on a corner where the public bus passes every half hour during the busy parts of the day (though in a comparatively comfortable residential district like this, almost no one ever takes it), and you can hear it coming by the sound of its engine. It runs along the street below our garden, and if it’s heading up towards the university and the university hospital it turns right. If it’s coming back, it comes up the hill below our house. It would be possible to find this bus irritating, but it is anything but irritating. It is regular; it is predictable. The bus is more like a creature--not like a squirrel exactly, but it takes on a certain creatureliness in its behavior. You can tell what’s it’s going to do. It’s because we are now more home-bound (as you might say) that we now notice the branches, the birds, the bus, the regular passersby who wave to us when we have breakfast on the front porch in the morning, or when there’s music playing in the garden in the evening.

This isn’t just any music. My colleague from the English Department, Howard Horwitz, together with Kent Lyngle, form a little combo called Gray Matters that plays gypsy-influenced music, including some of their own gypsy-flavored compositions. They like to practice for their various gigs in our back yard. The way we’ve reorganized it with a path so Brooke can get into the lower garden also forms a little sort of natural stage, and they play music that attracts neighbors and moves us with its exquisite mournfulness.

Here’s a view of the garden taken from our neighbor Mike Evertsen’s roof, when he was up there recently cleaning out his swamp cooler (making Peggy worry about the kinds of accidental falls that lead to situations like Brooke’s); you can imagine Howard and Kent wailing on the lower deck and Brooke and I and various caregivers and friends listening admiringly from the upper one, enjoying a good laugh once in a while.

Brooke talks about other evening in the garden: I like to tip back in my wheelchair and get a view of the world that I’ve never ever gotten before. Right now it’s very quiet; not even a branch stirring, though the gibbous moon-slice is brightening above. In the morning there will be birds and squirrels and way more wildlife than we ever thought inhabited our yard; they will all come out into the sunlight, except perhaps whatever eats our lettuce at night while the beans are busy growing.

On Candide. Candide repairs to his garden. Why not? We’ve done what we could in our lives and while we didn’t retire here from the despair of being unable to change the world, as Candide does, and indeed we don’t think of ourselves as retiring at all (Brooke is officially retired but Peggy is still working fulltime), sitting quietly in a garden is something we wouldn’t otherwise be doing if we could still be tracking around in fast-moving foreign countries, going to concerts and shows, being welcomed at dinner parties with people we enjoy. Life is different, and despite the fact that it has huge limitations and sometimes fierce pain, it also has its unexpected pleasures.

Al-Ghazali, the 11th-century Persian poet and philosopher, describes the Islamic view of paradise as a garden with green birds. The birds here aren’t green, though the magpies have some iridescent blue-green feathers along their backs and tails, and this is only a paradise for just a few fleeting moments on some particularly lustrous days, but there are moments now and then when a certain contentment pervades.

Now it is July 17, ten days or so since we first started this entry. This is Brooke writing, but Peggy will get to edit it. I won't sum up what has gone on over the past ten days except to say that there's been more progress in physical therapy, especially in the pool. But as always more progress and more strength means some days of pain that follow a difficult workout. That's pretty much been the rhythm: pain, progress, pain, pain, progress and progress, pain.

We have loads of family visiting over the next two weeks, which is why we'd like to write this now. I am about to teach my own final class of the early summer tomorrow, on Wordsworth's poem “Tintern Abbey.” This makes me both happy and sad at the same time, happy, because I love teaching the poem and can't wait to do so; sad, because my little poetry group will have to disband, and I might have to wait until nearly the end of September to teach again, a course I’m preparing for OSHER on the dazzling women of the Odyssey, you know, Calypso, Circe, Helen of Troy, Nausicaa, and of course the faithful Penelope. I am thinking, though, of asking anyone who is interested if they want to do a little set of group meetings this August on Shakespeare's sonnets. Obviously, I can't get enough of teaching.

Today a group of us took a hike, with me in the TrailRider, along the beautiful trail that goes south from the pass at Big Mountain. The flowers—columbine, lupen, penstemon, arnica, morning star, wild rose, and many many others--were absolutely lovely because the spring and early summer were so wet. You’ll see Ed Fisher and his son Joe in the first picture serving as sherpas for the TrailRider, together with Chris Horner and Dylan, the Fishers’ dog, but there were many others in the party: Michele Fisher in the background in the second picture, Polly Wiessner, Chris Jones holding up the TrailRider, Kirtly Jones, Julia the caregiver, and of course us, Peggy and Brooke. There were a few flies in the ointment, so to speak, the kind that appear in early summer and give little bites, but that didn't stop us from having a wonderful time. Now it is hot, and summer as really settled in, but we hope this photo from the trail will let you see where we’ve been. What a miracle, it seems, to be able to be there, out in this spectacular part of the natural world, when you can’t hike or walk and are still completely dependent on the kindness of others. When we reflect back on this whole journey, it’s pretty amazing that we’ve been able to come as far as we have, even if this has been a long and often excruciatingly difficult road so far.

We will make this the last little chapter for a while. Our writing job is almost complete, as least for the time being; we’re settling in to life. It feels a milestone. (But keep checking; we may have to take up writing again sometime soon. And keep coming, calling, writing--we're settling in to life, but we absolutely still need all of you.)

Sunday, June 19, 2011

Teresa Jordan's Year of Living Virtuously (Weekends Off)

Teresa Jordan, a writer, visual artist, scriptwriter, and memoirist, is best known for her work on Western rural life, including the cattle ranching country of Wyoming where she grew up. Her books include the memoir Riding the White Horse Home and the classic study of women on ranches and in the rodeo, Cowgirls: Women of the American West. Recently, she’s been keeping an extremely interesting blog called The Year of Living Virtuously (Weekends Off), inspired, she says, by Benjamin Franklin’s list of thirteen virtues and the seven deadly sins. She writes of many topics, but recently focused on Brooke’s story, brilliantly distilling our long blog into the following piece. It was picked up by the independent magazine Catalyst, which published this in its June 2011 issue.

Meanwhile, we're rereading our blog ourselves. Brooke says he's astonished by some of the things described, especially about his situation early on after the accident, and that in particular he doesn't remember some of the pain: Peggy says she remembers seeing all of it, though that's an entirely different thing from living through it.

We had lunch in the garden for the first time yesterday, among new little plants just starting to grow after a long, long rainy season this year.

The Long Road: Brooke Hopkins’s Story

He who has a why to live can bear with almost any how. —Friedrich Nietzsche

How do you want this to change your life? —Peggy Battin, speaking to an honors English class about facing adversity.

In the fall of 2008, at the age of 66, Brooke Hopkins retired as a professor of English literature at the University of Utah. Much beloved by his students and the recipient of every teaching award the University had to offer, he was also an avid outdoorsman and traveler. He and his wife, Peggy Battin, a renowned medical ethicist, had plans.

But first, as a retirement gift to himself, he bought a new bike. Less than a month later, he was sailing down City Creek Canyon above Salt Lake City when he came around a curve and collided with another rider. The other man was unhurt though the impact snapped his bike in two. Brooke, however, landed face down, unable to breathe. He had broken his neck and was paralyzed from the neck down.

Before the accident, Brooke was always in motion. Tall and exuberant, his vitality was the first thing people remarked about him. Now he could hardly move his head. On a ventilator, he couldn’t speak. His secretions had to be suctioned every four hours and sometimes as often as every few minutes. He was helpless as a baby: fed by others, picked up and moved by others, bathed by others, his bodily functions managed by others. At first there was little pain, but as the “spinal storm” of the initial trauma receded, spasms often wracked his body and nerve pain left him feeling like he was being stabbed with a million needles, set on fire, and crushed by a whole-body vice.

Peggy’s career had focused on end-of-life issues, especially physician-assisted suicide and euthanasia. She and Brooke had spent years discussing the right of mentally competent adults to decide for themselves whether or not life was worth living. But advocating the right to make a decision is not the same as knowing what decision you, yourself, would make. A few days after the accident, crying together in the ICU, Brooke mouthed to Peggy, “We can still have a wonderful life together,” and Peggy answered, “Yes, we can.”

Their daughter Sara started a blog a few days after the accident to keep friends and family informed. As Brooke’s condition stabilized, Peggy started writing, and in time, as a speaking valve on the trach tube allowed Brooke to speak for increasing amounts of time, he added his voice. At this point, they have written the blog together for almost two and a half years, creating a portrait of an almost unfathomable experience that, as Brooke’s rehabilitation doctor, Jeffrey Rosenbluth, points out, is “as close as you can get to understanding [paralysis] without being paralyzed.” But the blog is more than an odyssey of physical endurance and adaptation; it takes us deep into the essential meaning of life.

From the first days after the accident, Brooke never thought he wanted to die. He had always sought out extreme experience: month-long treks in the Himalayas and Peru, ten-day Vipassana meditation retreats. He chose to view this new experience as a combination Buddhist retreat and marathon training. In addition, he and Peggy welcomed sustenance from their broad network of close friends, some of whom came almost every night with food and laughter, buoyed themselves by Brooke’s amazing spirit. Even in the ICU, he mouthed that he was beginning to understand who he really was, and that he found the love showered on him “transformative.”

But the road ahead was more brutal than anyone could have imagined. Initially the doctors said that Brooke would go home in February, less than three months after the accident. In fact, it took more than two years as each success seemed to be met by a life-threatening setback: cardiac arrest, repeated returns to the ICU for pneumonia, urinary tract infections, a scrotal abscess.

Smaller reversals could be just as frustrating. Moved to a rehabilitation facility, he had been able to get outside on occasion in the “Cadillac,” a motorized wheelchair. But when a small sore on his rump prevented him from sitting, he was a prisoner to his bed again for months.

Weaning off the ventilator was a Sisyphean task. Normally, thousands of muscles and nerves interact to facilitate breathing, but the accident left Brooke with only a handful of them working. Each breath took incredible effort. At first, even a few minutes off the vent proved terrifying; he felt like he was drowning. Gradually, he built strength and endurance. During one 30-minute session, he fell into a meditative state, which he described to Peggy:

For the first time in his life, he says, he experienced what he had always been looking for in Buddhist meditation, but had never actually found: the full life of breath. By the time the 30 minutes were over … he had attained a serenity beyond anything he ever expected to experience in his life.

Later, as his breathing strengthened and these transcendent experiences became more common, Brooke wrote about the “paradox of prison” that can hold the body in confinement—in my case, not just confinement but paralysis—and yet liberate the spirit. My monastic cell—when it’s not serving as a hospital room or a living room for receiving friends and family and guests—is like that kind of prison, confining and yet sometimes strangely liberating when I breathe. … I like it. I love it.

But almost every time Brooke had an ecstatic experience, it was followed by a devastating reversal. He would work up to several hours off the vent and then an infection or simple fatigue would set in and even twenty minutes became unbearable.

Less than an hour ago Brooke was howling I can’t do this anymore, this is too hard, I’d put a knife through my heart if I could, and Peggy was saying it would be like putting a knife through her heart too–hyperbolic talk, perhaps, but expressing real pain….

Then a gentle gesture from an aid would fill Brooke with gratitude, a friend would stop by with food or music, or Brooke and Peggy, as they wrote together, would reach a deeper understanding and measure of grace. “Maybe this isn’t the saddest night after all,” they wrote after one particularly brutal day. “If there’s a lesson we’ve been learning … it’s about not assuming that good will stay good or, more important, that bad will stay bad.”

Writing the blog together became an essential activity, what they did together in the way they used to hike and ski and dance and travel. Sometimes the voice was Peggy’s, sometimes Brooke’s, more often the two voices merged into one. “It’s like having an intimate conversation with one another….It’s male and female combined… [there is] something androgynous about it but also something somehow erotic.” It was a way “to make something truthful, even sometimes beautiful, out of the suffering of the past year.” In addition, as they struggled to be honest, they confronted difficulties they might otherwise have skirted.

One night, while Brooke was still in the rehabilitation center, their friends, Roger and Jane, came for dinner. Roger had been diagnosed with ALS about the time Brooke had his accident. Now, while Brooke slowly improved, Roger gradually declined. When they were younger, the two men had mountaineered together, and sometime during the evening, Roger said, “We’re brothers in adventure again.” It would have been more accurate to say they were brothers in adversity, and the two couples discussed their reasons for framing something as an adventure rather than a disaster, even when “it means death for one and permanent disability for the other.” By the end of the evening, Peggy wrote in the blog post, “Brooke and Roger had reaffirmed: ‘We’re brothers in adventure again.’”

Although Peggy and Brooke usually write together, Peggy did this post alone, and when Brooke read it the next day, he objected to the ending. “I don’t think you were aware of Roger watching … the kind of pain I was in while you and Jane were talking,” Brooke said. “Roger was just watching, watching, his eyes bugging out as if to say ‘I can’t believe all the crap you have to go through with all that suctioning and cathing and stuff.’” Brooke worried that the ending trivialized what Roger had ahead of him; in fact, Brooke looked back on many of his own posts as ending too easily with a “rhetorical bow.”

I used to say … ‘this is going to be such a journey’ and ‘I look at this as an opportunity,’ stuff like that—but I don’t think I knew what I was talking about….This is a hundred treks. This is a hundred marathons…The reason we come together, you and me and Jane and Roger, is because we’re fortifying each other, not just adventuring out in the wilderness when we choose.

Shortly after the accident, while Brooke was still in intensive care, Lama Thupten Dorje Gyaltsen, the head of a Tibetan Buddhist temple in Salt Lake City, came to see him and told him three things. First, he said, “the body is nothing; it is ephemeral; the mind is everything.” Next, he instructed Brooke not to ask why the accident had occurred, just accept the fact that it had. His third instruction had seemed perplexing, even esoteric, at the time but has perhaps proved most helpful of all. “Your suffering,” he told Brooke and Peggy, “has and will produce compassion, even deep happiness, in many many people who know you and even those who do not.”

Brooke and Peggy are teachers. They have devoted their lives to forging a deep understanding of their respective academic disciplines in order to pass on the gift of that knowledge. In this new discipline of a changed life, they have continued that generosity through the blog.

Brooke also wanted to teach students directly, and last fall he arranged to teach a class on Thoreau’s Walden for the University of Utah’s Osher Lifelong Learning Institute. Though he had taught the book many times, he had friends read it to him and listened to tapes. He practically memorized it since he wouldn’t be able to page back and forth in class.

Although he was still at the rehab center, he was almost weaned off the ventilator, and the idea was that he would teach once a week at home, initially during short trial visits that would allow him and Peggy to troubleshoot his permanent return, scheduled for halfway through the semester.

He was ecstatic to get back to two things he loved, home and students. He taught four classes and was about to move home permanently. Then he woke up with ice cold skin, dropping blood pressure, and was soon incoherent. He was rushed to the ICU in septic shock with aspiration pneumonia. Once more he was on the vent and heavy antibiotics.

As soon as he stabilized, he was thinking about Thoreau again, preparing his aide to teach the chapter “The Pond in Winter” if he could not. A couple of classes were postponed while Brooke recovered, and then he taught “Where I Lived and What I Lived For.” Afterwards, Peggy asked Brooke point blank: “What do you live for?”

When Brooke addressed the question in their next post, he cited two reasons. The first was existential, the basic will to live, to keep going. The second was to bring some sort of gift into other people’s lives. He wrote about the extraordinary depth of giving and receiving love that he had experienced since the accident, of the pleasure of collaborative writing, and of the importance of “trying to bring to whoever is out there reading this some sense of what it’s like to live with nearly continuous suffering and still have some sense of joy.”

“This may seem outrageous to you,” he told Peggy after they had worked on the post for awhile, “but I think I’m happier than I’ve ever been.” Then he hastened to add, “It isn’t always that way; sometimes it’s really, really hard.”

At the end of November, two years and two weeks after his accident, Brooke finally made it home. The challenges continue; in some ways, as Brooke and Peggy wrote recently, “the hard part is just beginning.” They considered discontinuing the blog but realized how vital it had become to both of them, “our joint project, our mutual work, the thing we can do together, really together. Dropping it, even for a couple of weeks, has made us lonely and isolated in ourselves. It’s as if we couldn’t talk anymore.” In truth, the blog is not only a way to talk to each other, but to delve deeper than talking allows.

Last fall, invited to speak to an English honors class, Peggy told the students about Brooke’s accident and the role that writing is playing as they struggle to thrive in spite of their vastly changed lives. She suggested that students meet adversity in their own lives with the question, “How do you want this to change your life?” Afterward, a student wrote her, “I can’t stop thinking about this question … I don’t have an answer yet, but I’m looking forward to figuring it out.”

Saturday, June 4, 2011

How Our Garden Grows

It’s been almost a month since you’ve heard from us. A couple of people have called, a few have written, and many have asked whether something is wrong. Nothing is wrong. In fact, things are going along pretty well. Brooke goes to physical therapy of one sort or another about five days a week and is growing stronger and stronger, although once again it's like watching grass grow: you can't see strength growing on a daily basis, and in any case strength isn’t like doing biceps curls or benchpressing 300 pounds, it’s more a matter of being able to keep your trunk upright, even twist it from side to side, but just the same Brooke’s strength is growing. A couple of days ago at physical therapy at Neuroworx he used the NuStep machine for the first time, with his hands fastened to the arm bars but his legs powering the pedals on his own. Then at occupational therapy at the University he used an iPad for the first time, working to swipe his hand across the screen so that he could read a New York Times article from start to finish. These both represent more of the ongoing physical development that’s been happening at an increased rate since he’s been home and thus able to get much much more in the way of therapy, though the increased rate is more or less like faster-growing grass—it grows faster, but you still can’t see it happening.

But of course, this progress is coupled with other things, and whether or not they represent progress is a question to consider.

Brooke still has many moments in which, he says, he can't really fully absorb what has happened to him. We called this cognitive dissonance earlier. But could it be a somewhat different process, or associated with a different process? We had dinner the other night at our house with a very interesting new acquaintance, Elizabeth Fetter, who injured herself when she was 17, something like 45 years ago, coming down in the dark from climbing a 60-foot Douglas fir: she stepped on a dead branch and has been paraplegic since. (We mention her name because her essay about delayed grieving is one of the 45 first-person stories that appear in From There to Here, Stories of Adjustment to Spinal Cord Injury edited by Gary Karp and Staley Klein—we haven’t seen the book yet but have read her essay.) We talked about grief, and the way she, by her own account, had postponed real grieving for many years. She said she thought this was unfortunate, unfortunate not to have done one’s grieving earlier but to have spent many years evading it with overanalysis, controllingness, and drivenness, all of which contributed to amazing success but at an emotional price.

Brooke responded to Elizabeth that the deepest emotion he has felt was more like mourning (as you may remember from his earlier remarks on Freud and melancholia), mourning for a huge loss. Is there a difference between grieving and mourning? It may not seem so, but he says it still feels that way—mourning has a long-term, nineteenth-century European resonance about it though grieving is a contemporary clinical term. Peggy observes that perhaps part of the difference is that one expects to recover from grief—provided it’s not what clinicians call ‘complicated grief,’ which typically occurs where there were dysfunctional relationships before the loss occurred—but mourning is something that can continue, perhaps at lower ebb, for a lifetime. Right now, Brooke and I are sitting inside writing this account while we can see one of our especially robust caregivers outside in the bright sunlight, doing what Brooke would have done had he not had his accident, shoveling rich black topsoil into the garden.

Oddly, whether it—mourning or grief or whatever it is--is more acute for Brooke than it has been over the last two and a half years or less so is curiously hard to say. Why less acute? Well, it’s been two and a half years, a huge amount of time, and one adapts to stuff, even immense changes. On the other hand, why more acute?—in a way, it’s more possible to recognize and express one’s deep internal mourning for the loss of the person you used to be. This may seem odd to other people, who are perhaps growing impatient with a continued emphasis on suffering, both physical and psychological, but in certain ways things seem at least as hard, or harder now that they have been, as one struggles and struggles to accommodate to such drastic change. It’s not just grief, which one might expect to abate after time, but deep, lasting mourning for something you don’t expect ever to be able to do again.

In any case, Brooke says, the feeling of strangeness still surfaces at times with overwhelming power. It's like waking up from a dream to realize that you’ve had a terrible accident—even now, when you wake up or even at unexpected times in the day, for a moment you can't believe that it's happened, that it’s not reversible, and then you adjust again to reality: pain much of the time, limitation, spasms, frustration, everything that goes with dependence. This still happens over and over again, even two and a half years after the accident, and probably always will keep happening. This is in spite of the fact that things are going really well, all things considered, and when I feel good, Brooke says,—after a hard workout, for example—I feel really good, psychologically and physically. That’s part of why the swings from awful to great and back again are so weird, and why grief and mourning are so mixed in with optimism and growth.

In the good moments, we’ve been working on the Get-Brooke-Into-His-Garden project we (naively) announced two years ago. There was to be a contest, of sorts—the idea was to figure out how it would be possible to get Brooke in his massive wheelchair into the lower part of our little garden. Here’s what we said, two years and one month ago:

“Get Brooke Into His Garden” Design Contest

Even though it may be some time before Brooke is able to come home—hard to estimate at the moment—when he does we’ll face a dilemma: he loves the garden next to our house, but won’t be able to get to it. After all, the deck is three or four feet above the garden, and at the moment he couldn't even get to that. Then to get to the garden itself you have to go down a set of stone steps: it won’t be possible to navigate these in a several-hundred-pound power wheelchair, and even if you could get down the steps you couldn’t drive around on the grass. So here’s the challenge: design a way for Brooke in his chair to get down into the lower part of the garden, keeping in mind the various constraints: the grade for a path can’t be greater than a certain number of inches per feet, there has to be stable paving of some sort, there have to be spaces for eating and entertaining, there has to be room to relax and smell the roses, and of course that means there have to be roses somewhere. And there’ll have to be other flowers and plants as well. Maybe even whatever attracts birds and keeps the quail we now have still coming. So are you game to rise to this challenge? It’s a contest…

Of course, this is a contest without a prize—except the pleasure of seeing one’s design or part of it come into being. And there will be reverse prizes for all contestants—not only might you see some features of your design incorporated in the final plan, but you get to bring something instead of taking winnings home: we’d love to have you come and bring a plant or two to plant together with Brooke: he’ll be the gardener, you be the hands that put the plant in the ground. So it won’t be just Brooke’s garden, but everybody’s, and of course it will be wonderful to have you all sit in it eventually and enjoy it with him.

So we’ve solved the problem of descending into an area 37 inches lower than ground level of the house; ADA requires a slope no steeper than one foot per inch of drop, so now we have a long, curving walkway with an 8.3% grade (more or less) that goes from house level to the bottom of the garden that Brooke can motor up and down. There’s also a deck that he can motor out onto from the bedroom area, higher than the old one and so closer to the birds and the trees. Almost everybody wins in this contest—it was really wonderful to have all those suggestions, and the best part is that our eclectic solutions have incorporated virtually all of the suggestions people made.

At the moment, though, this new garden has everything except green—there’s just dirt everywhere, nice rich topsoil ready to be planted but at the moment bare. If you remember, though, it was a contest with reverse prizes—the prizes involve getting to bring something to grow. Come and see what’s going on—and if you like, bring a plant we can put in a pot or stick into the ground, maybe a little low-growing shrub or a vegetable seedling or a small flowering perennial that will remind us of you indefinitely and let us thank you for helping to get Brooke into his garden.

Even two years and a month later than we ever anticipated, it is good to see this contest coming to fruition and the prospect that this garden will really grow.