Brooke Hopkins & Peggy Battin

Here's the article

2011-11-14T20:47:00.001-08:00

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

By Peggy Fletcher Stack

The Salt Lake Tribune

Published: November 14, 2011 10:23AM
Updated: November 14, 2011 01:49PM

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.

pstack@sltrib.com

—

Three Years, Exactly

2011-11-14T13:03:00.000-08:00

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:

http://www.sltrib.com/sltrib/home2/52898534-183/hopkins-says-lake-salt.html.csp

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

Art vs. Nature

2011-10-12T20:53:00.000-07:00

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):

TRAVEL NEEDS FOR BROOKE

at the moment, requires two trained caregivers

CARE LOGS AND DOCUMENTATION

Care logs

Medications logs

Reservations, tickets

Addresses, directions, etc.

Contact information for physician, staff, etc.

MEDICATIONS

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

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

Bacitracin antibiotic ointment

Suppositories, etc.

RESPIRATORY SUPPLIES

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

Inspirometer

Oxygen tanks (just in case) + nasal cannula

Inner cannulas

Trach sponges

SAT monitor

NURSING

Thermometer

Blood pressure cuff

Dressings for pacer site

Hypafix

Baby monitor and powercord

TENS unit and pads

Toiletries

Toothbrush, paste

Razor, shaving cream

Comb

Mouthwash

Go-betweens for teeth

Hand splints

Anti foot-drop boots for night

CATHING AND BOWEL CARE

(take enough for extra days, just in case)

straight catheters

self-contained cath kits

gloves

lube

urinal

blue pads

yellow pads

briefs

male guards

wipes

garbage bags

Enemeez

XL gloves or plastic cups for voluntary voiding

FOOD, ETC

Smartwater

Chapstick

clothing protector

hand gel

breakfast food

Be sure to take straws along all the time.

CLOTHES, ETC

tearaway pants

shirts

longsleeved shirts

socks

gown for sleeping

visor

outdoor jacket

poncho

blankets

Theraband for knees

EQUIPMENT

Wheelchair charger

Portable overhead lift (note: 65 lbs.)

Motor for lift, plus powercord

Sling

Slideboard

Ramps: 3’, 5’

Foam wedge for bed

Tape, CD player, tapes, disks

Headphones and iPod

Flashlight

Heating pad

Water bottles

Mister, spray bottle if weather is hot

Surge protector, power strip

(very important for hookups in hotel room)

ACTIVITY EQUIPMENT, ETC.

TrailRider

Sunscreen

Bug repellent

Camelback or equiv.

$$$ cash money

laptop and powercord

stick drive

cellphone and powercord

MISCELLANEOUS FOR TRIP

Power bars

Bananas

Big umbrella (good for sun, too)

Camp chairs

Kleenex

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.

Catching Up

2011-08-10T13:08:00.000-07:00

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.

Epilogue (for the time being)

2011-07-17T22:46:00.000-07:00

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 90º 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 11^th-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.)

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

2011-06-19T11:26:00.000-07:00

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.”

How Our Garden Grows

2011-06-04T09:33:00.000-07:00

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.

Progress Report

2011-04-30T22:37:00.000-07:00

We know that our last entry was somewhat disturbing to some people, the part about hate as the shadow side of dependency and therefore as part of a marriage in our new circumstances. Actually, that account was begun over two months ago, after Brooke had come home from South Davis and the initial honeymoon of novelty and gratitude that he was able to come home—as stressful medically as that time was—had evolved into a more realistic facing of the situation that arriving back to one’s home in such drastically altered condition involves. It’s just that we couldn’t finish that account in all these months since then, try as we did, but we still wanted to do so in order to give you a fuller, more honest picture of what this experience involves—even if it means probing into areas that are disturbing, not just for us but for many people—witness the comments made to that entry in this blog.

It’s Easter weekend now, at least it was when we started this new set of remarks (though now it’s a week later), and we want to report to you on all the good things that have happened over the past four and a half months that Brooke’s been home.

First, there’s the physical stuff. Brooke’s been doing heroic workouts at the outpatient spinal cord rehab clinic at the other end of the valley, Neuroworx, and not only is he much much stronger in the physical therapy he gets there, but even the half-hour van ride on the freeway to get there isn’t as much of an endurance trial as it used to be. He can do leg pushes with both legs, snow angels, much much more—that is, much much more for someone who is still functionally speaking almost entirely paralyzed. He does two days a week on land as they call it and one day a week in the therapy pool—this is the hardest, best workout and one he has to do off the pacer, so it is a huge challenge but also a huge thrill. He’s working another two days a week on occupational therapy at the U—also a challenge and a thrill. (When he arrived home a few days ago, Brooke told Peggy that they’d given him a humungous workout on his biceps and triceps—“but I asked them to,” he said.) He’s working on hand motion too. He’s still got much more going on the left side of his body than the right, but there’s action on the right too. Most important, he’s got far greater trunk strength; he can sit almost fully upright on his own, unaided, for a considerable length of time.

But while we’re celebrating these gains certain painful memories intrude: among them, Brooke remembers, an OT at South Davis when I was first there told me I had no trunk strength and would never have any. To cement his point he read something out of a book; I guess I believed it. But now we know better: what he was reading is true for people with high-level cervical injuries that are complete, but my injury is incomplete—that’s what makes any return possible at all. We’ve wasted a good bit of time with therapists who didn’t appear to recognize the difference between complete and incomplete injuries, and who didn’t understand that to get any return at all, you have to keep working and working for it. Now, not only does Brooke have vastly increased trunk strength, but he has enough to spend as much as a half an hour in what’s called a standing frame, something that you begin by sitting on as a sort of chair, but that cranks you into an upright position and holds you there for as long as you want, enhancing bone strength and the cardiovascular system, and perhaps preparing what might turn out to be later developments in function. Still somewhat of a beginner at this, he can already stand as much as half an hour even without medication to keep his blood pressure up, and longer with it.

Seeing Brooke standing is an overwhelming experience, at least for me, Peggy says. There’s something about the magic of being upright. And he’s so tall—I know he’s 6’5”, but I’d forgotten how tall 6’5” seems. He can stand with his elbows propped on the Lucite tray table—and a few days ago when he did it we spent much of the time watching a documentary on the TV screen—a documentary on dirt.

Next, there’s respiratory progress—lots. Brooke’s cough is developing, a little more almost every day, so that it’s gone from being entirely absent to being deep, almost gutteral, and most important, productive in bringing up secretions and effective in clearing the airway. All this is crucially important in the next step in respiratory rehab: getting control of one’s respiratory secretions, so that you no longer need the trach for suctioning or anything else. Brooke’s set his sights high: that’s to have the trach, an upside-down L-shaped piece of plastic pipe that goes straight in through a hole in the throat but angles down into the windpipe, replaced by something called an Olympic button: a little plastic plug that keeps the stoma open but doesn’t block the airway at all. You have to have a good cough to do this, and good airway clearance, and you have to be prepared to be suctioned in a trickier way, but just the same it would be real progress. That’s where he’s headed now, working to reactivate the upper airway by doing his CoughAssist therapies through a mask over the nose and mouth instead of through the trach, starting to move secretions out through his mouth and even nose. He can spit now. His ability to bring up secretions and also aspirated food has improved dramatically; earlier, he says, if something got stuck in my throat it would previously have led to near collapse; now, I cough it up. That’s certainly not easy and it doesn’t always work, but it’s way way better than it has been. One thing that’s contributed a lot to better respiratory function and better general health is using CPAP at night, just like other folks with sleep apnea, only Brooke can do it with the backup ventilator through his trach—but this ordinary therapy has made a huge overall difference in his general health, especially since he now sleeps really well at night. And even though this isn’t Brooke’s highest rehabilitation priority at the moment, he’s also been breathing off the pacer—a couple of hours in the morning, almost every morning, and sometimes in the evening; three and three quarters hours today total. It’s beginning to feel normal, he says.

Then there’s progress in communication. Thanks to our great friend Pat Zwick, who’s spent countless hours (and sleepless nights) working on voice-activated computer stuff, Brooke can now check into his email (bhopkins111@gmail.com) and, using Dragon Naturally Speaking, dictate replies just by speaking into a little microphone: he talks, and written text comes up on the screen. We gather that these voice-activated programs are being used by doctors, lawyers, anybody who has to do a lot of dictation, even novelists and writers of all sorts, but it’s a godsend for someone in Brooke’s situation, who has a lot to say but for whom something like Dragon makes it possible to say it in a natural way, just talking about stuff that’s important. We’re still having trouble finding a cellphone arrangement that works (although there’s a new lead as of today), since you normally have to push a button on before your cellphone’s voice activation starts, and then push again off so as not to use up the battery. It may not seem like rocket science to find a way to circumvent this obstacle, but so far we haven’t found it.

There’s pill progress too, that is to say, getting rid of some of the medications Brooke absolutely needed at the beginning but which have of course side effects and risks, which you don’t want to take unless you need them. For example, we’re celebrating getting off the last of the backlofen, the drug used for controlling spasms. Brooke had huge spasms early on—vice-like grips around the entire chest, for example, and his legs jumping off the bed—these are the product of nerve impulses so to speak ricocheting back and forth in the lower body when they can’t get through to the brain. Brooke’s been tapering down on this drug for some time now—he started at 40mg four times a day, 40-40-40-40, then a couple of months ago went down to 40-30-40-40, then 40-30-30-40, then eventually 10-10-10-10, then, a couple of nights ago 0-0-0-10 and finally down to 0-0-0-0, period. This is a drug that has cognitive side effects, and so something we’re delighted to be entirely rid of, but of course that it was utterly necessary in the maximum doses right after the accident and can be entirely dispensed with now, even if the decrease has been so slow, is one among other signs of progress.

And there’s progress with, or rather, against pain. One of the side effects of being as immobile as Brooke is is that one’s muscles atrophy. In particular, the muscles of the buttocks, like everything else, atrophy, and the downstream consequence is that the wheelchair which had been proportioned to him originally had become a source of agony, since his buttocks sit lower in the chair, the knees higher, plus many other displacements. The changed position irritates the muscle called the piriformis, the source of what’s known as deep hip pain and knee pain as well. But now, after months of pain, Brooke finally has new leg rests that are long enough to accommodate his lower legs without pressure—he describes it as “liberation,” from pain and from anxiety about the onset of pain. That acquiring these should have taken four months from the time the Seating and Positioning Clinic at the U hospital identified the source of his leg pain is a story in itself, but at least they’re here—and he is enjoying sweet relief.

And finally, there’s progress with some things that may seem like really small potatoes. There was an old skin tear on his ischial sit-bone on one side that had remained open for almost eleven months at South Davis; it has completely healed. We still watch it and everything else about skin integrity, always a serious problem in quadriplegia, like hawks. But even in this long list of things in which progress is being made, it is actually big potatoes that this long-term lesion has healed; healing is itself actually a function of the fact that he’s healthier and so much other progress is being made.

In addition to the physical stuff there’s Brooke’s teaching; he’s always said it was his lifeblood. He’s teaching his third OSHER course of the year, this one on Homer’s Iliad. Last fall, in his first course, teaching Walden, he was still on the ventilator, talking with considerable difficulty; he’d spent weeks training with a speech therapist to be able to talk in full sentences and with enough volume to actually teach a class. Then he taught The Winter’s Tale; that went much better, and he missed no classes, unlike the first time. Now, his voice is fluid and large, resonant, so that even though the class size is still limited to 15 students and he still teaches at home, with the students packed into our living room, he can actually make himself heard and conduct a back-and-forth discussion with students. The Iliad is not an easy text to teach, especially when you can’t riffle through the pages of a 600 page text, and a number of people were amazed that Brooke had chosen to teach it, including, he says, himself in the weeks prior to the beginning of the course. But the text has unfolded nicely over the past weeks, and he’s looking forward to the final two sessions. Not only hasn’t Brooke missed a class, knock on wood, but neither have any of the students except they might have brought infectious stuff into the house—they all seem fully involved with this course. It’s a mighty text, and it takes a mighty effort to grasp it, but both Brooke and the students are doing it—that’s what makes a great course. Already, he’s planning to teach a course on the Odyssey in the fall, and maybe after that Virgil’s Aeneid, Dante’s Divine Comedy, and who knows what after that. In the meantime, because the summer stretches out in front and there are no OSHER courses offered in the summer, he’s thinking about conducting an informal reading group, possibly on Romantic poetry, maybe once a week—(if you might be interested please let him know; our living room still only holds 15).

Strength is returning every day and so is confidence. Peggy is not as afraid of leaving Brooke and Brooke is not as afraid of being left. Over the last couple of months she’s been to London, Belgium, Wisconsin, Portland and Seattle, a fraction of her former travel but only what she wants to do. Brooke says he has greater emotional happiness. It’s still not any fun to be quadriplegic, with pain, spasm, hot and cold flashes, and 900 things that one misses, but just the same it’s extremely encouraging to experience this progress, and he says he has the sense that all the pushing that’s been going on has been moving in the right direction. He speaks of increased selfconfidence and pride in what he’s been able to do. He talks of a general sense of optimism despite all the losses, a sense that both of our efforts have been rewarded. And he can concentrate now on things other than his own physical situation; he’s been watching Marcel Ophuls’ The Sorrow and the Pity with our friend Dave Mickelsen, four hours of intense focus on the French resistance, and while nobody could watch it all at once and it will require at least four nice dinners as well as viewing sessions, this is something well outside one’s own inward sufferings.

What’s the bottom line in a progress report? It’s about progress, however slow, and the continuing awareness of how much the physical and the mental are intertwined. The new surge of physical progress, clearly a product of the extensive physical therapy Brooke’s been getting at Neuroworx and also the occupational therapy at the U’s outpatient rehab department, has enormous benefits for his mental condition. It’s like restoring the mind/body relationship to what it normally is, or some approximation of it. Did Descartes get it wrong, to take the mind and body to be entirely separate, connected only by the tenuous fiction of the pineal gland? Well, in a sense, yes, and in a sense, no. Right after the accident Brooke was fully paralyzed, during that spinal storm period, with no motion and no sensation at all in his body below the level of the injury: he was only head, and had no body that he could use or be aware of. Then some things started to come back, but slowly; then there were long setbacks and backsliding from inadequate therapy; now things are moving forward again. Of course this means pain and frustration, and sometimes the edge of despair. But for the most part it is a climate of energy and optimism, with small but significant amounts of new function and sensation appearing nearly every day. It’s exciting again—even though we’ve learned that one can survive without connecting with one’s body at all, as if the pineal gland had withered away—because being able to work on one’s body, to get it to move however slightly, to discover new sensation that it feels, is after all a source of real pleasure in itself.

Brooke had a dream last night about walking—he found himself, to his amazement, able to feel his limbs and make them move, and by the end of the dream he was looking for somebody to go backcountry skiing. While walking, let along skiing, may seem extraordinarily farfetched, his previous walking and motion dreams all involved impairments—broken skis, uneven legs, always about to fall down. This dream is more optimistic in its subconscious wish-projections than any of the previous ones. Of course there are still bleak moments, sometimes very bleak, but not nearly as many as some time ago. He’s actually better, healthier, happier, even despite everything. And that’s not just because spring is finally on the way.

The Shadow Side of Dependency

2011-04-13T22:26:00.000-07:00

Dinner with L. and D., it seems like just a couple of weeks ago, but was actually about two months ago. We made some notes at the time, and we’re still thinking about it. In the middle of that dinner, Brooke turned to L. and said, I want to tell you something that I’ve only told Peggy and no one else. This happened back in Rehab. Peggy, you were just sitting on the side of the bed, we were just talking about something, not anything very important, but it just came into my head, a clear voice, I hate you. It’s come back now. The fact that it’s come into my head two years later, says something.

The voice that says I hate you is the voice of an infant. I am that infant, at least some of the time. Peggy and I used to talk about my physical state two years ago when it was just beginning to show some signs of returning motor function breaking through the paralysis; we said that I was in some ways like an infant—learning to speak, to breathe. Now I recognize that at least some of the time my psychological state has been that of an infant too.

In talking with my psychiatrist friend K., I’m reminded of a book by Melanie Klein called Love, Hate, and Reparation. She doesn’t dismiss hate, but sees it as an emotion like many emotions, one that should be not shied away from, but admitted, because only when you feel guilt for the hate can you start the reparative process that leads to all forms of creativity and love. Awful as that moment was to me when I heard that voice inside me say I hate you to my wife, whom I’d always thought I loved, the shadow side came out of dependence and revealed itself, revealed its darkness. Somebody, one of K’s teachers I think, said, there’s gold in that hatred, in the shadow side. If you can talk with it, K. was saying, envision it as anything but a person—an object, say, or a stone, even a horse or a bull, you can recognize it and deal with it constructively.

According to Kleinian theory, infants hate their caregivers as much as they love them, and when they hate them they feel guilt about that, if they’re going to go on the journey of life—they need to feel guilt, because the hate isn’t deserved. The love of the caregiver, whether the mother or someone else, for the infant is deep and real, and when the infant gets to the stages of reparation it wants to give back. Maybe I was at the beginning of this stage when I said I love you to D., though I hadn’t hated him or L., only Peggy.

Did I say that in my head, that I hated Peggy? I indubitably did. Nothing could take that away. I felt terrible. But I lay there, only a couple of months after the accident, still comparatively recently paralyzed, and tried to figure it out, why do I hate her so? It was a sharp, stinging emotion that got covered over. But now, two years later, despite our many expressions of love, we’re trying to bring what hasn’t been fully acknowledged out into the open, and a repeated tinge of hatred has reawakened that is helping to bring that out of the shadow.

The shadow is something you cast over it to obscure it. The second shadow is all those things we’ve been having to recognize, like finding that after all this suffering and effort to come home, after all these pages of love story, we find ourselves at least for some time alone together. Alone. We have to wrestle with our psyches; we have to be aware of the dozen caregivers’ psyches; we have to wrestle with intrafamilial tensions, we have to wrestle with all these emotions--but the minute you stop being afraid of them they lose their power over you. They evanesce.

They should evanesce. Something that hasn’t been achieved by me, says Brooke, is a kind of love that goes beyond all these binary emotions, love/hate primary among them. In the cave at Dunhuang, at the beginning of the Silk Road in western China, where Buddhist pilgrims stayed and worshipped, there are many many paintings, done over centuries. The one I was most struck by was one of the Buddha undergoing his last temptations from the Satan-equivalent, Maya. Maya sends all these dragon-creatures at the Buddha, and the dragon-figure is a central theme in the painting, but you see how the Buddha’s love and compassion, and his equanimity, make it impossible for these forces of hate and anger to corrode his heart. He sits safely in that space, on the right-hand wall of the cave, and has sat there so to speak for hundreds of years.

These may seem to be just the ravings of a castaway, Brooke said, but there may be some truth to them, and the truth is that there’s a tighter, more subtle relationship between love and hate than the usual dichotomy we recognize.

* * *

This discussion began a couple of months ago, as we’ve just said, when D. and L. came over, bringing dinner, and it was we think part of the adjustment that is involved in coming home. We talked about hate and love, and about how honest the subconscious could be, when a sentence like that could seem to come out of nowhere, I hate you. It was a little bit like a moment in Torrey when we were standing on the porch of our cabin, and there were two boys with a gun in the field down below, and some deer, and my subsconcious said, shoot it, like some aboriginal moment that goes back 60,000 years to the most primitive hunting instincts of prehominid beings. Did I mean it? I thought it, though I’d have been horrified if they did it.

Yes, I’m amazed at how honest the subconscious can be, the shadow of the shadow-side of dependence. This feels like so much a part of the texture of genuine human emotion. So much of our lives are artificial, or culturally shaped, that they don’t seem entirely real, that unbearable lightness, insubstantiality of being. But this raw stuff cuts right through; it feels entirely, completely, even overly real.

When you said goodnight at South Davis, Peggy, or when you come downstairs in the mornings here at home, which has also become a ritual, often I love you, sometimes I hate you.

Question: how does one accommodate hate, or partial hate, or concurrent hate, without trying to obliterate it and without undercutting the amazing love that also surrounds it? Does one just keep this painful kernel buried inside of some pleasant, soft exterior, or does one recognize it as a full partner in the emotions? After all, hate is entwined in even ordinary loving relationships; it brings us back to the past and the deep strata of our psyche, not just the little wounds and resentments but to deep gulfs of understanding. Imagine that somebody stands in your way; imagine feeling that you’ve got to get out of the house; imagine someone whose very being shapes you in ways that aren’t your own. Imagine all the husbands and wives who tamp down the feelings of I hate you until it explodes in rage or violence; it’s much better to acknowledge what’s there and that it’s in some sense normal, that I hate you that’s part of everyday love.

For me of course, it’s more so, given how dependent I am. But this will happen to many others of us. Remember my father, Peggy, or your father, each of them dying of cancer, remember how dependent they each were in their bedridden state at the end? Did they hate us, in their dependence, even when we were clinging to them so strongly, and with so much love, as they died?

Maybe so. Maybe hate just is the shadow side of dependence, unavoidable but bearable in the end, especially when you come to see how tightly intertwined it is with love. After all, I hadn’t really focused on that I hate you for almost two years, though I’d revisited it from time to time and it’s still really there, and will no doubt be there as long as I’m still dependent on you in ways I cannot control.

Recovery in a House of Love

2011-03-31T22:32:00.000-07:00

Brooke returned from University Hospital in the middle of the afternoon a week ago—a relief to get out, he said, although he also said at the end of his stay that it had been by far the best place to be. The next day was his 69^th birthday, and although his sister had knit him an elegant scarf, it was a birthday we could only celebrate in the most minimal way. Too much respiratory challenge; too much working with the home IV antibiotics; even too much oxygen around the house to have any birthday candles. Our daughter Sara was here, a wonderful support, but even with her and her calming presence recovery from pneumonia (which is what Brooke’s problem turned out to be) is agonizingly slow. Your need a lot of rest to recover from pneumonia, and Brooke hadn’t been getting it over the weekend; it was too exciting to be home again.

On the roughest of the days after he was home, Brooke was extraordinarily short of breath and could hardly sit up to eat. He had to go back on oxygen during the day, not just at night. In addition, he’d been still seriously troubled with a painful leg, pain that moves between his hip and his knee, apparently due to a muscle that knots on the backside of his thigh and old trigger-points and injuries that reactivate as his leg muscles become more active. We don’t mean to be complaining here about how difficult and slow recovery can be, since after all it is recovery. Pneumonia for someone with Brooke’s challenges is a real risk, something we have to take seriously. Part of recovery involves understanding how important it is to rest, but more than that it’s about treating one’s own body in a way that balances the need for rest against the need for activity.

But today, he’s feeling better: he needs less oxygen; he’s obviously stronger, and he can eat in the normal, sitting-up way. To be sure, he’s got a huge amount of pain going on, but he’s often able to ignore this, so much experience has he had over the past two years with pain. But perhaps the most difficult part is the psychological pain of setback: he’d come so far at Neuroworx, working on trunk strength and in the pool, but after this period of inactivity it seems that he has slipped back many steps in the process of getting stronger. Of course, he’s had pneumonia before, twice in fact since the pacer was installed, and one of those times very severe, much worse than this one. It is sometimes hard to remember that one has gone through the same pattern of experience before; doing well, sailing along, then blam! blam! Blam! Pneumonia again. Not to be melodramatic, but it’s blam, and it seems, at death’s door.

But now it’s the beginning of April, the barely observed birthday is over, it’s spring, and things are beginning to look up. Crocuses are coming up in the yard. Ironically, it’s the leg pain, unrelated to everything else except perhaps positioning in the wheelchair, that is the most agonizing—and it is agonizing, though it doesn’t occur every day. Then there’s discovering and holding onto the notion that there’s some pattern—you go through something like pneumonia, but each time, you go through a very long period of recovery, longer than the disease itself; but recognizing the pattern actually helps. There is one huge compensation, however, and that is that we now live in a house full of love.

A house full of love? This phrase just slipped out on that worst of days after Brooke had come home when he was talking with his psychiatrist friend; they were talking about home life, and this phrase just formed in Brooke’s mind he said and slipped out before he even could think about it. But consider: we have twelve people helping us, our various employees; they work in shifts of greater or lesser extent; they’re here around the clock, 24/7. Some of them have known one another in different contexts—they’ve been classmates in respiratory therapy school, or classmates in nursing school, or in high school, or are friends of friends, and some are folks we just chanced to meet in some inexplicably random but fortuitous way. But they’ve been coming together as a team, and even though they aren’t all here at the same time, they overlap in shifts or do double shifts or trade off with one another, and the night people meet the daytime people when they change shifts at 7 am. They also meet each other at the all-staff inservices we have every six weeks or so to consolidate the training the staff has in all the aspects of Brooke’s care. They’ve come to know each other; they help each other; some cook together; sometimes they bring their dogs; they begin to care about each other; and not only does one of them already live just across the street but another is moving into a house she’s renting just two doors up. The little frictions that sometimes form among all these people with their different ways of doing things, which emerged after the honeymoon when Brooke was first home was over, have been dissipating, and they now form a sort of community, a kind of extended family, a sort of village one might say, engaged in care for Brooke. They support each other in their growing affection—that’s the only thing you can call it—for Brooke.

With this pneumonia, Brooke’s been pretty sick. The irony is that the harder things are for Brooke, the more palpable this sense of love among the caretakers becomes. And it’s not just the caretakers, Brooke says, but all the friends who come to talk, or read, or just sit. Some have done so for the past two-plus years. Some come to work on computers, or to help with e-mail. Some come to read poetry, or plant flowers, or help me think about my upcoming course on the Iliad. This reinforcement really helps to keep one alive.

What would happen if I were this sick and there weren’t such reinforcement, asks Peggy. (She’s always asking these probing questions.) I don’t know, says Brooke, I have no idea, maybe I would have to try to starve myself, though they’d try to keep me alive; but I know I couldn’t stand it without this reinforcement. I couldn’t stand it. But then I couldn’t have gotten this far without all the support I’ve gotten over the past two and a half years—I feel obligated to keep living, in a way, aside from the will to live. I don’t honestly believe that that will would be strong enough to counter the pain, if there weren’t such support. The loneliness would be overpowering; I’d have to have a level of religious belief or something like that to survive, if I didn’t have these real people and their love with me; I’d have to have some kind of religious belief to go it alone, because the pain is sometimes really unbearable. I’d need more than what I’ve got, if I didn’t have these caregivers and these friends and my wife and family too.

A day later, Brooke continues, I’ve been having a few thoughts about what it would be like to go through this absolutely alone, as many people in fact do. To be really alone doing this, you’d have to be in a hospital in Moscow, say, or some very distant and alien place where you couldn’t speak the language. But I think I’d have to believe in Heaven or some other dimension of reality, where I didn’t have any right to let go of my life if I couldn’t stand it anymore; not being even able to do that would be the negative part. You’d have to believe in some place where going through this would be rewarded in some way. Because not to have people around who really cared about you you’d have to dig so deep, it’s hard to imagine how that would be possible. Of course, there are people who live in solitary confinement for years, like Robbin Island or Insein Prison or hellholes everywhere in the world, where they’re beaten and tortured every day with no hope of escape; these people are genuine heroes, and it’s beyond my capacity to imagine what they go through. Compared to their existence, mine seems rich. After all, what’s actually going on here, though I’ve been for the most part confined to the house while I’m still recovering, is a pretty extraordinary phenomenon, and it does compensate in some measure for the paralysis and pain that I experience on a daily basis. I see so much growth and change in the people around me who form our staff, much of it from contact with each other as well as from contact with somebody in a compromised situation like me--all of it for the better. I find them all interesting; I care about them too. Imagine, a house full of love. How many ordinary people live in houses like this, where you can almost feel it in the walls? Of course it isn’t like this all the time, sometimes it’s just ordinary everyday, and working here taking care of me is just a job, but especially right now while I’m still recovering from this pneumonia I can really feel what this ubiquitous care, this emerging love, does for me and for us all.

Homeward Bound: A Moment of Radiance

2011-03-23T20:39:00.000-07:00

Three nights of extremely vivid dreaming, about walking, bicycling, rowing, swimming underwater, sculling; I saw some people and behind them was a magnificent shooting star, absolutely unbelievable, it came out right behind them. I’ve had sex dreams. I’ve had dreams about going back to Harvard. I’ve been thinking about Jesus, about the miracle of getting the paralyzed man to stand up and walk. So despite our rather dour communication of a few days ago, talking about confinement in an institution, this hospital stay has been very therapeutic, especially now that my pneumonia is under control. One of the characteristics of the therapy has been these three nights of vivid, vivid dreaming.

Did they give me any special drugs? Apparently not. Maybe being on the ventilator at night is responsible, I don’t know; or maybe it’s just a matter of further development in dealing with my condition.

In the first dream, I was a character in a Thomas Hardy novel, dreaming in color, like Tess of the D’Urbervilles, four people being exploited by having to pick corn; all the colors were muted reds and browns, and then in the same dream I was getting ready for my freshman year at Harvard, free of all my adolescent neuroses, free of all neurotic romantic attachments; but then I started to wake up and realize I was paralyzed and I didn’t know how to register for my courses; and then I awoke fully into my paralyzed state, which is always something of a downer—though I’m smiling at the moment, even laughing, as I narrate this dream. There were many other aspects to this dream, like finding paths near lakes and finding new ways of getting into the mountains on your own, and then showing them to other people. All the grass was high and green. (This is an example of what Freud called secondary revision, revision that goes on when you tell your dreams. They’re not what you saw, and they’re not what you experienced in the dream itself, which nevertheless still remains vivid in your consciousness but can’t be put into words.) In the second dream, the next night, I dreamt that I had found myself in a resort on the Chesapeake Bay (of course, I don’t know whether there are any resorts on the Chesapeake Bay, we only know scruffy half-forgotten places like Smith Island that are nevertheless wonderful) that had a terrific boathouse full of beautiful single sculls. I took one out on the bay, which was completely placid, and I rowed rhythmically and flawlessly through this placid water. Then I was on a sailboat, and had to discover where the anchor was, so I swam without any scuba equipment under the water and looked up at the sky above. I thought to myself, if I had to die, I’d be happy to die in this calm place, under the water. This is another example of secondary revision, since the dream had many more elements than that and I’ve only selectively remembered some; it included being with a woman who had the most beautiful legs I’ve ever seen, and I watched her shave them. Then the third night I had other dreams about rowing and also about bicycling. All these I was able to do by myself; I wasn’t paralyzed at all. In that dream, I saw a couple in the distance at night, standing against the dark sky, and then suddenly a shooting star burst in the sky and went sailing down until it finally disappeared. There were many other aspects to this dream as well which I can’t recall now, but were equally vivid. I kept thinking afterwards that there must be something in the atmosphere of this hospital room that was inducing these dreams. I also found myself reflecting on the miracle told in the New Testament about Jesus, who says to the paralyzed man, something to the effect of Rise up and walk. And the man rises up and walks. I also dreamt about giving a sermon based on this text at the Unitarian Church, but I don’t know where Jesus is right now. I wish he were here, although I know the dream, or rather the miracle, the story in the New Testament, needs to be interpreted as something about having faith and that the rising up is really a spiritual rising up rather than a physical one. But there must have been eyewitnesses to this; I want to believe this miracle, that I really can rise up and walk, despite the fact that I can’t feel either of my feet very much. Maybe I’ll be able to do it some day, if I have enough faith and perseverance. I’d love to be able show that it can be done. This is a mood of optimism, some kind of deep creative optimism, the mind, the psyche, the unconscious, pushing pushing pushing, trying trying trying to blossom. Open up. To awaken the body. To put it back together again. All of these thoughts I’m having right now, as I dictate this to Peggy; it’s a happy moment, a moment I’d like to hold onto for a long time. The happiest moment I’ve experienced in the last two and a half years, although Peggy says she doesn’t know about that. I would say that if people could see me now, they’d see that my eyes are bright with joy. Oddly, it’s the conjecture about the possibility of rising up, rather than any actuality, that’s bringing me joy. And all this just two days before my birthday, my 69^th birthday—how could I possibly be 69? I can see my hair reflected in the window and it’s gray. Amazing, isn’t it, how the mind can be independent of the body; maybe this is an example of how you can speak yourself into joy if you let the inhibitions go, the repressions, that part of you that won’t really let joy express itself.

Is it crazy to have dreams like this, fantasies like this, thoughts about miracles, and maybe even crazier to tell them to people? Is it evidence that I haven’t “adjusted” to my paralysis? I don’t think so; I think it’s just the other way around, that the fact that I can have these dreams and can acknowledge them as part of my new emotional life is a healthy thing. I’m dreaming about events in my past life, embellished of course, just the way ordinary people dream about embellished versions of stuff that’s happened in their own lives too. William Blake has an idea that we have a “shadow” in us, in our psyche, that battles against this visionary gift, and that the shadow must be seen as just what the word implies, a shadow which only exists if you believe it exists. In these visionary moments, the shadow is defeated, it’s blown away by the wind of the visionary imagination. That’s a powerful thing; it’s what I’ve been trying to describe here.

* * *

We started our conversation this evening with my saying that there are sounds in this room, the sounds of little alarms and the whisper of the compressor for the airbed and background noise from the corridor outside my room that if you’re in the proper mood aren’t irritating at all, but can be enjoyed in the way that John Cage invites you to enjoy the random beauty of the sounds around you that make a kind of natural symphony. If you are calm enough, this place is not confining at all.

I’m being discharged to home in the morning.

The Paralysis of Being in an Institution

2011-03-21T10:21:00.000-07:00

Last Friday one of our home respiratory therapists reported that Brooke had diminished breath sounds on the left side of his lungs; this followed a particularly rough night—lots of secretions, lots of suctioning, difficulty breathing, and during the night he went back on the ventilator—for the first time in at least five months. So off we went to the University Hospital for a chest x-ray and then down to the spinal cord clinic to see the doctor. The x-ray seemed to show a small pneumonia, and then the issue was whether to try to treat it at home or to be admitted as an inpatient.

The back-and-forth nature of the way we made the decision about whether to go to the hospital is instructive, especially about the roles of autonomy, paternalism, and population-based information in modern medicine. As the first doctor framed it, speaking softly, it’s your choice: either go home or be in the hospital, and he explained something about what was involved either way: there are pros and cons to each, and it’s possible to run the antibiotics at home but of course more support is available at the hospital. The second doctor, speaking far more loudly and observing that Brooke didn’t look very well, warned almost coercively about the horrifying risks of not being in the hospital: you could have a plug. You could have a clot. Your blood pressure could drop; you could die. The third person, a nurse, said the thing that made the biggest difference: quads go down faster than other people.

So, after considerable delays while a bed in an ICU was being located, Brooke spent a first night in the Neuro Critical Care Unit, and then the next day was transferred back to familiar territory—the IMCU, the intermediate care unit Brooke was in the last time he was hospitalized. We’re seeing some familiar faces among the nurses and respiratory therapists, but also remembering the rather traumatic time he had the last time he was here, in late November or December, with a quite serious pneumonia.

So what’s the diagnosis this time? Pneumonia again? Or could it be that the diaphragmatic pacer isn’t working right, and that’s why there are inactive areas in the lower left lobe of the lungs? It is astonishing to transition from what we realize is the comparative quiet of home to a high-tech hospital: in his room there are multiple sources of noise, from the loud and constant whirr of the compressor for the low-air-loss mattress on the bed to the sharp, intermittent beeps of the infusion pumps when one or another of the three antibiotics that are hanging runs out. It’s also astonishing to remember how many people are involved in his care at the hospital, and while our home staff of a dozen seems like a lot, it hardly compares with inpatient medicine. But more than anything it’s the sense of being in an institution again, with its protocols, its procedures, its received ways of doing things. Brooke keeps saying, this doesn’t seem quite real. Sometimes he says that when his degree of alertness is fluctuating with oxygen levels, and sometimes he says it when he’s completely rational and observing every little thing: still, it doesn’t seem quite real.

It’s not an irrelevant observation. Ongoing institutional life (on Medicaid) is the lot of most people with an injury like Brooke’s; most families don’t begin to have the resources, financial or emotional, to provide 24/7 skilled care at home. Brooke is talking now about the relative freedom of home, even if it is of course far more limited than his earlier life at home, and he is saying that he absolutely would not want to die in a hospital. It’s too noisy, he says, I’d want to die in a quieter place. It’s too impersonal, he adds, thinking about the professional demeanor so many caregivers adopt—though not all. Are you thinking about dying? asks the extraordinarily sensitive nurse, alert to any symptom that might suggest trouble is brewing, but Brooke says no, he was just thinking about the difference between hospital and home, the choice we were making just two days about whether to try to face this pneumonia in one place or the other, and the way one of those clinicians had said you could die, something that’s not often said aloud in hospitals. When it is said in this environment, Brooke acknowledges, it hits you like a bombshell.

Fortunately, talk of dying doesn’t seem relevant now. Brooke was pretty sick yesterday, but today he’s alert again and comfortable, enjoying visitors, and listening to The Iliad on books on tape, preparing for the course he’ll teach this spring. But he’s tired of lying in bed, and tired of not being able to keep to his own schedule. One thing that is so terrifying about being in the hospital again, Brooke says, is the way it induces passivity. Once you’re here, it’s easy to let the institution take you over and make all your choices for you; in fact, it’s almost impossible to resist this. One of the best things about being at home is that although your movements and general life are severely constricted, you at least have a range of choices and abilities to carry them out, like getting out of bed, moving around in the wheelchair, getting in the van, going places, and so on and so forth. Having a limited series of choices is by no means ideal, to say the least, but at least you’re your own person. In the hospital everything is designed in ways that have the no doubt unintended effect of wearing you down, not so far at the moment as what’s been called ICU psychosis, but nevertheless to paralyze you in additional ways, mentally as well as physically. This is partly due to the way a huge institution like a hospital actually works; it works very slowly, it is beset with regulations and restrictions, and nobody in it seems willing to challenge the system very much. This is actually quite a good hospital with many wonderful people, and much has been made of the fact that it’s currently ranked first in the nation. But it’s still an enormous institution, and I’m caught so it seems in the bowels of it. In part, working on this blog is almost the only way I have of asserting my autonomy here; if it weren’t for this I’d be lying here just watching the television, even more completely passive and unable to do anything at all.

Brooke says he’s already planning his escape from the hospital, hopefully tomorrow or the next day. He'd do the rest of the antibiotics at home. This means we can go back to the more usual forms of paralysis that are everyday at home, not just the physical quadriplegia but also paralysis in the face of political and social issues like climate change, energy policy, immigration issues, global health and injustice, and everything else that can keep you awake at night but that it seems almost impossible to reform.

Blank Spaces

2011-03-08T21:28:00.000-08:00

We’ve tried to end this blog at least twice over the past three months, since Brooke has been home. We never seemed to get to it. It took too much time. We didn’t have anything to say. Surely you’ve noticed that there’ve been many fewer postings; if you were a reader of something like this, wouldn’t you take two weeks of silence as the end of it, as if the authors had given up? But that’s not the case--for a whole set of complex reasons we’ve been unable to bow out. But we’ve tried. For example, we wrote:

We keep thinking that it’s an ending. Perhaps it’s time now to end our work on this blog. In many ways also this is a sad moment for us, since we have loved writing it, and we are deeply grateful for your participation in it, whether you’re written responses or not (of course, we loved those). In fact, we have had to have an audience like you in order to go on writing what we have over the past two years. But the time has come to have some closure. Life will go on. Both of us will continue to develop and hopefully mature in this as Brooke’s recovery to whatever is his “new normal” continues. But we can’t go on forever with this.

But we couldn’t do it. We just couldn’t quit. Just the same, there’ve been long pauses, gaps, silences. In a way these gaps represent the difficulty in our getting started in this new life. There’ve been some high-spirited postings recently, like the visit of Peggy’s nephew and son on the same lively evening, or an account of why eating at home with friends is better than eating at restaurants, but they don’t convey the complexity of what’s really been going on. It’s about coming home under completely changed circumstances, when coming home was supposed to be the culmination of two years’ seemingly superhuman effort.

Poems have blank spaces. Think of Wordsworth’s “A slumber did my spirit seal”—they speak. Usually they are strophic, they take things to another level, another emotional level, you know, like the Ode on Immortality—the voice stops, that’s the way the poem progresses. That’s the way this piece of writing, this blog, needs to progress, it needs to confess its pain.

Brooke says, you’d think when you had a scrotal abcess like the one I had a year or so ago that would really be pain, and it was, but that’s nothing compared to this challenge. This is a time for a deep emotional sounding, an exploration of the abyss that may lie below the surface.

We both recognize that the hard part is now beginning. We wanted to end this blog, but couldn’t end it, because something really huge hadn’t been confronted yet. The strains this whole thing, my accident, my being home, puts on a marriage are unbelievable—even a happy marriage—and digs up stuff one could otherwise live and entire lifetime without ever having to recognize. All of the courage and optimism and determination is somehow undercut by opposites, by terror, by anger, by despair. This is the shadow that counterbalances the optimism, the shadow that’s been casting itself over our new life, now that we’re finally at home.

This subsurface current of psychic pain has emerged from the shadows in a conversation with two close friends, L. and D.. They just came and brought dinner basically to try to relieve Peggy from all the stress of running what’s essentially a one-bed hospital and let her go to the symphony that was playing that night, but she never went. They’d written a letter they wanted to post to the blog about how fragile Peggy seemed, how much help she might need to seek, and how perhaps friends could think of bringing by some food now and then so she wouldn’t have to think about the cooking all the time. But that was two weeks ago, and much has changed since then, both in shadows revealing themselves and in increasing fortitude in facing them.

It took a conversation with these two friends of very long standing, who’ve been seeing things from the beginning, to get us to open up about what we find really painful to write,, what has surfaced since Brooke has been home. We started to talk honestly, and even before we got to dinner Brooke had gone into the bedroom to get cathed. He came back from bedroom and said that while he was being cathed he’d had a really painful breakthrough; he was shaken. He’d been thinking about people and their lonely marriages. He said we have a serious, deep problem that we need to confront; we’re in a situation in which we’re lonely together, in the house. I know, said Peggy. I want to talk, Brooke said, and I poured out this stuff about being alone together. That kind of opened up the emotional floodgates.

But it began more easily:

How does an outsider deal with your pain? D. had asked. Presence, Brooke answered. You weren’t mentioned by name, but you’ve been present at three or four occasions when I had extreme pain. Even trying to recapture those moments, if you’re not the one suffering that pain—the assumption is that you’ll get through it, there’ll be an end to it, that pain. You stayed and stayed and stayed, There’s a huge amount of love in that, absolutely overwhelming. Then Brooke remembered something still earlier, when he was first in the hospital and couldn’t talk because he was intubated and then trached but without a speaking valve, he had spelled out something with the alphabet board, to D.; it said I love you.

Our talking with D. and L. started from there, spun out from there. We needed them the way you need a therapist, someone you’re close to who understands you and who understands the situation. That was the setting for our conversation. Everything grew from that. We kept saying that the blog will not be beautiful and true, if it can be, unless we try to plumb this abyss, about the coming-home sense of unexpected aloneness. We suspect it happens to every close couple where one of them has been in a hospital for years and they’ve developed a different way of being together, but they’re both now back where they started—though, of course, in a very different way.

We tried to explore what ending the blog meant, and we came to recognize that that has been 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.

Sometimes people write to each other, and write at a very deep, personal level. There are some legendary correspondences—Keats’ letters to his friends and his family, for example—and some modern practices that make use of the written letter, rather than in-person exchange, to explore deeper feelings and commitment: think of Marriage Encounter, for instance. But those things involve one person writing to another, and that other person writing back to this one. But in this blog we haven’t so much been writing to each other; we’ve been writing together, forming what has sometimes been an intertwined duet and sometimes a single voice that speaks out to other people. It’s been our way of talking.

Though we don’t look backwards much, we remembered a moment when we were reminiscing about the things we used to love to do together, like hiking together and talking. We always said, let’s go hiking. We never said, let’s go talking, although the talking part was at least as important as the hiking part. So while we’ve recognized that we can’t go hiking anymore, we have thought that we could still do talking. Indeed, talking together was part of almost everything we used to do—so, we said, we haven’t lost all of it.

Or at least that’s the way it seemed. But losing the blog seemed to be losing not just the kind of talking we used to do hiking, but what not only talking together but writing together has made us see. That isn’t always happy—more on this shortly, the shadow-side of dependency—but just the same important to see.

Over dinner, D. said, I’ve been thinking about your trying to end the blog, but perhaps there was something artificial about this, the anxiety of ending. Termination. Finality. But this is an ongoing story. For the space of a quiet dinner at home with these friends, writing together became a four-part voice, itself a new thing.

D’s right; it is an ongoing story. We’re not finished. There’s still stuff we still need to be honest about. Stuff we don’t have the courage to write down, or, more accurately, stuff we haven’t had the courage to recognize. This is hard; homecoming was such a goal, something that was the aim for over two years, and while it is wonderful in many respects it is really coming home that makes us face the hardest things, about what a catastrophic injury and radically changed circumstances can mean.

* * *

But. oddly enough, writing this has brought us much closer together again. Much closer, as if we’d weathered the storm that in fact everyone had said would be on the horizon.

Perhaps we need this blog for ourselves, as much as we thought we were doing it for you.

On (Not) Going to Restaurants

2011-03-03T21:58:00.000-08:00

Somebody remarked some time ago that maybe Brooke would like to be going out more, for example, to restaurants. We’ve liked going to restaurants in the past, though usually in other more elegant cities or in exotic foreign places. We’ve always loved long, talkative meals, good food (at any social level, from street food to fancy establishments), and of course good company.

But we can’t realistically go to restaurants at the moment. Can you imagine not just the enormous gaze-attracting wheelchair rolling into a restaurant with someone who needs to be fed by hand, who may aspirate at any moment and require that the very noisy suction machine be turned on, who has to recline the wheelchair every twenty minutes, and for whom—let’s be realistic—the consternation of the maitre d’ not to mention the other diners would be enormous. At the very least, we’d be seated in the back somewhere, out of the way, where we wouldn’t disturb anything. We know this. Brooke says he’s thought about it a hundred times.

But, fortunately, we can get restaurants to come to us. Or better. We can get takeout--for instance, from our local Thai place, pretty good, and there are plenty of others.

We cook stuff at home: Peggy operates the hands now, but Brooke is the director. In all our lives together, Brooke’s been the principal cook. A really pretty good cook. Peggy’s been the sous-chef or maybe sometimes just the lucky person on whose plate this fabulous meal would appear. Brooke cooked Italian food, wonderful pastas (though never French food--too hard to do right); he cooked Indian food; and he went through a several-year-long phase of cooking Chinese food: he started by following trustworthy recipes extremely assiduously, and then only after a couple of years of self-training did he begin to improvise in the matter of Chinese food. Marvelous. He knew what he was doing. He cooked Mexican; he cooked risottos; he cooked pork loin in milk sauce from Marcella Hasan’s great Italian cookbook.

But he can’t do the physical part of cooking now. But the physical part isn’t the only part. He can drive his wheelchair into the kitchen (that’s why we had it remodeled this way) and supervise while Peggy does the cooking. Tonight, it’s scallops with pasta and a spinach-and mushroom sauté. But it’s clear that this is going to be a long haul and that Brooke’s expertise is perhaps more needed than ever. Fortunately, some of our twelve-person staff are pretty good cooks, and like to do it, so we eat well (and nutritiously) all the time.

But that’s the home cooking. Getting restaurants to make take-out stuff for you is one thing; having really wonderful cooking come to you is even better, better than even the best commercial establishments can do. A couple of nights ago, for example, some Iranian friends brought Persian food (cooked by the husband, it’s important to note!)—spectacular food, something we’d never had before--and, recognizing that Brooke was having a bit of a hard time, they didn’t even stay to eat it with us, though we ate it later with enthusiasm. Then the next night some friends brought German pork loin, the tenderest imaginable, and like the previous night also good company. We’d had a delectable salmon a few nights before, with a truly amazing conversation. It would be impossible to chronicle the remarkable meals people have brought over the last few years, both at South Davis and now at home, but even more impossible to chronicle what it’s like to have people do this for us.

It’s really about a new way of life. Restaurants? Who needs them. We’re having better food and far deeper conversations, because it’s a private space without a lot of waiters bustling around and other diners gawking at you; we’re beginning to recognize it as a new stage in our social lives, the only thing that’s really possible right now. We wouldn’t wish the reason for this on anyone, but now that Brooke is home and we’re discovering what’s possible (and what isn’t) in our so-called new lives, we want to recognize what’s good. Dinners with friends (and family) are good, especially when they do the cooking.

And if everybody else is phoning ahead for reservations and studying the menu and figuring out which wine to order while they talk about what a good restaurant they’re in, well, that’s okay with us. We’re just not ready for that quite yet and may never need to be.

Thoughts from a family visit

2011-02-24T13:06:00.000-08:00

Until last Thursday (February 10, 2011) the last time I saw Brooke was just a few weeks before his accident back in 2008. He happened to be at his sister’s apartment in Manhattan when I popped in to see his brother-in-law to “talk shop.” I remember the joy of the surprise, as we rarely got to see each other. We spoke for a few moments, shared a big hug, and he was gone.

The reason we hadn’t seen each other since his accident was purely one of my selfishness. I was afraid to see him. I was avoiding exposure to the very pain and suffering Brooke was enduring on a daily basis. He had people taking care of him, so I would ask myself why I needed to go see him even if I desperately wanted to tell him that I thought of him often, tell him I loved him – I could accomplish that from afar. I had already cried after the first time we spoke since his accident sometime last year. Why would I want to subject myself to any more of that? Why change the way I think of Brooke when I picture him? Why let him see the concern I was bound to show upon seeing him in his current condition? Selfish jerk.

As you can tell, Brooke’s accident affected me deeply. Our relationship had gone through its ups and downs, but over the last decade or so we had developed a bond. I don’t know where the bond came from, but it likely formed when we hiked to the top of Antelope Island together back in April of ’02. Looking out over the Great Salt Lake and seeing the majesty of the mountains in the distance was so special that any time I see mountains I am reminded of that day. Over the years we spoke infrequently, but when we did it was meaningful.

And that is what this last visit was – meaningful. Stepping into “M Street” is like stepping back in time for me. The images on the wall, the layout of the rooms, and even the way the sidewalk meets the property in front are all things that trigger various positive memories for me as a child. I spent a few minutes outside preparing myself to forever change the way I saw the place. I had heard through the family grapevine that life at home was manageable for Brooke, but also that every day was a challenge. I was about to go snowboarding for the weekend, so the last thing I needed was a downer to start off my weekend. (Hey, there’s that selfish jerk again.)

However, the visit turned out to be everything but a downer. Brooke was busy working on a lesson plan for his Shakespeare class when I came in – seriously?!? Working on a class? I could tell from his speech pattern that he was using some sort of voice-to-text technology. Very cool. That set the tone for the rest of the visit. I headed upstairs to see my favorite Aunt Peggy and my cousin Mike Battin (who happened to be in town.) We got all caught up on each other’s latest goings-on and headed downstairs to really start the visit when Brooke was done with his work.

The evening was truly amazing. What was likely just another day for Peggy and Brooke was life changing for me. We enjoyed some drinks together, had a great slow-cooked chicken dinner, and talked about everything old and new. Brooke required help the whole time, but it was easy to pitch in and do my part. Mike and Peggy were on “caregiver autopilot”, and what I observed was far from pain and suffering. It was more like poetry. What I thought I would perceive as juggling the various tasks associated with Brooke’s care was more like well-choreographed theater. At points we had Brooke laughing so hard I thought he was going to short-circuit his diaphragm regulator! What I witnessed was that Brooke was not just alive, but living.

I don’t want my description of the evening to diminish the seriousness of life for Brooke. He still requires ‘round-the-clock help. But, the way he interacted with all of the people who were in and out of the house that night makes it clear that the help is acknowledged and appreciated.

What was just as meaningful to me was that I knew I had changed when I left. The visit with Brooke has changed the way I view the accident, Brooke and myself on so many levels, which is a topic for another time. And speaking of time, not so much will pass before I return to M Street to see Brooke again. - Bill Hogenauer, 2/11

Arrival of the Fire Department

2011-02-20T19:02:00.000-08:00

We know we’ve been silent, and we owe you more. Our new life is complicated, for reasons we’ll describe. But here’s one vignette from this new life, now that Brooke is at home.

A week or so ago, at our invitation, the fire department showed up to explore our situation. There were four of them, big guys who looked even bigger in their massive uniforms, but coming with one mission: to see how to make things as safe for Brooke as possible, whether in a fire or in any other emergency.

They like to keep track of the folks on vents in their area, they said, or with other health problems—after all, they’re the paramedics and rescue squad. So they looked at the way our house is arranged so that Brooke can live entirely on the ground floor, and checked out the various routes of egress. That makes it easy, they said, though they also said that if there were a real fire, they’d not just check the downstairs but the entire upstairs, including every closet—that’s where children try to hide in a fire. They admired our new backup generator, fully automatic. They noticed the fire extinguishers. And of course they talked with Brooke, noted the various sorts of respiratory equipment on hand from the oxygen tanks to the backup ventilator, and carefully examined his diaphragmatic pacer, making sure they knew how to change the control box and where the extra batteries are stored. We need to put together a “Go Bag” of stuff you don’t want to have to wait to assemble, if he were to need to be transported to the hospital in an emergency: a copy of his physician orders, his medications list, his Living Will (full code, it says), and of course copies of his insurance cards.

The firemen made it clear that they were impressed by the job our staff has been doing: you’ve got it together, they said, lots of other people don’t. This is praise we didn’t take lightly. But as they finished their visit, they turned and said, we recognize you. Two of them had been on the crew that had rescued Brooke at the time of the accident, two years and two months ago. You’ve lost so much weight, one of them said, but they knew him just the same and remembered answering that call.

What’s the moral here? It’s not just about how many people were involved in rescuing one man, those like the flight nurse in the first moments after the accident and now the fire crew, who were called by someone—we still don’t know who—who ran down City Creek canyon to the bottom, where you could get cellphone reception, and were there within only a few more minutes—but that they still remember. Part of our continuing desire to piece together the fragments of what happened at this accident, so long ago, is to give some real thought to what rescue means—not just for us, but also for them.

Practical note: Peggy started to post this from the Paris airport en route to a conference in London, but somehow it didn’t quite work. She’s back home already--quick trip! (This has some elements of getting back to "normal.") But Brooke’s sister Lisa and niece Isabelle was here for a much-anticipated and excellent visit while she was gone.

Help Wanted

2011-02-06T16:33:00.000-08:00

HELP WANTED

This is a want ad, of sorts. We’ve got such a great little staff taking care of Brooke now that he’s at home that the word is getting out, and we’re beginning to get requests from other folks who want to know how we’ve done it. For example, there’s a young man named Chris Leeuw who’ll be coming from out of state to do rehab at Neuroworx here, where Brooke is now also beginning outpatient physical therapy. Chris is 28, a reporter for a television station in Ft. Wayne, Indiana and more recently a consultant for ChaCa Search, Inc., a new business venture where 20-30 thousand human guides throughout the country answer any question through a text message.

Chris was injured in a freak swimming accident in southern Indiana on a kayak excursion last August 8, 2010 and suffered a spinal cord injury that left him paralyzed from the neck down. He has been in acute rehab for about 2 months and then in sub-acute rehab for 4 months and has gained remarkable movement and strength in all limbs. However, he has a long way to go for ultimate function and self-dependence. He is coming with his mother, Monice on February 16, and will be looking for someone to help them for several hours in the mornings, 7-10 am, and again in the evenings., 7-10 pm. He is able now to feed himself and walk with a walker, usually needs just one cathing at the end of the day to completely void the bladder, and also needs help with suppository and bowel program and with showering. I f anyone has experience with ranging muscles in arms and legs, that would be valuable, but not necessary.

Chris and Monice will be staying in an apartment owned by Neurowork in Rose Park, just off the freeway so it’s easy to get to rehab. You can contact them at mleeuw@aol.com, copy to me at battin@utah.edu if you will; more details of his life and journey can be found at the website:

click "visit", password is "chrisleeuw"

Not long after, there’ll be someone coming in to Neuroworx all the way from South Africa; he’ll also need help. Brooke and I will try to be something of a clearing-house for folks who are available and have some experience with spinal cord injury; we’ll pass on any information you send us to Dale Hull MD at Neuroworx. And Katie Beard, would you let us know how to reach you; PeekYou’s Pople Search says it has 349 people named Katie Beard, and though Brooke and I both remember you very well indeed, we don’t know which one of the 349 you’d be.

You can probably guess from this account of our own staff that things are going generally very well, but have been very very busy. More news soon.

Turning Points

2011-01-23T22:15:00.000-08:00

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.

Mourning

2011-01-11T21:18:00.000-08:00

Loss. It’s quite a difficult period, coming home, and even though I’ve been home over a month, it’s still difficult. It makes you reflect on loss, and the hope of gain. Think of things like Matthew: you have to lose yourself in order to find God. Or The Winter’s Tale: there’s Perdita, the lost daughter, found, or the ending of The Tempest, Gonzalo’s speech on losing and finding. Or Thoreau, in the Walden chapter “The Village,” it’s not until we are lost, that is to say, turned around, that we discover ourselves and the infinite extent of our relations. They’re all about loss. Of course I’ve gained a lot in coming home, but the sense of pervasive loss is still acutely real. I’m mourning, you might say.

From Laplanche and Pontalis, The Language of Psychoanalysis, entry “The Work of Mourning”: Intrapsychic process, occurring after the loss of a loved object, whereby the subject gradually manages to detach himself from this object.

Freud’s thesis in Mourning and Melancholia is that the work of mourning involves detachment, a decathexis, a severing, from the object that is gone, the person who has left or died. That’s a very painful process: it involves remembering; it involves periods of depression. But in that healthy work of mourning you do eventually detach yourself and find another attachment, another person or another work in life. Think about people who are losing their jobs, or having their homes taken away in foreclosure, or are alienated from their kids, or who are enduring losses in so many other multitudinous ways. There’s loss everywhere, and mourning, too, though many people who are mourning loss will eventually begin to detach themselves from what they’ve lost and go on to something else.

Of course, there are many warm, welcoming, even exciting things about coming home. I’ve been making very real progress in breathing, in coughing (extremely important for respiratory health!), physical therapy, arm and hand function, speech, bladder control, and more. It’s extremely energizing and hopeful. Peggy and my various caregivers are always devising new exercises, like flexing what I can of my forearm muscles when I’m being turned in bed. I have a fabulous PT homecare person who is doing work with my trunk muscles (where earlier PTs had said I’d never have any trunk strength at all), and who devises very clever ways of getting the most strength from my legs as well. The OT works relentlessly with my hands, and is preparing me to be able to use an iPad, at least to turn the pages of a book—this way I could read a book, instead of having it read to me. But alongside all this excitement about my much more rapid progress now that I’m home, there’s still the underlying sense of loss and the everpresence of continuing mourning.

That’s one of the reasons it’s hard to come home. For someone who has lost function as I have, and there are millions of us, it involves something similar to but not quite the same as mourning for a lost object, a dead object, but here the lost object in the case of someone who has lost function is an important part of his or her self—or at least the illusion of his or her self, an illusion of selfhood that of course sustains you. Returning to one’s home involves multiple, multiple, multiple reminders of what one has lost. The ability to cook. The ability to get out of bed and walk around. The ability to turn lights on or off. The ability to clean up the garden. The ability to hug someone. The ability to do almost everything that involves physical activity. This is why a wheelchair like mine is such a blessing, even if it looks so forbidding to the rest of you, because it makes at least some of these things possible—moving around, at least. The ability to go for a walk—at least I can motor around through the graveyard near our home. Just the same, I no longer have the ability to do almost all ordinary activities. Our friend D., who also had a spinal cord injury, told a story of driving with his wife and seeing someone mowing a lawn: he burst into tears. According to D., his wife’s consternation, why are you crying? was so obvious, but so was his answer, I’ll never be able to do that again.

According to Freud, that crying would be therapeutic, part of the process of working through what it meant to have a spinal cord injury. There’s grief underneath the surface. There’s got to be grief for you, my friends and family, too; part of me has died. It’s just hitting home, though we’ve been talking about it before; that’s partly why I’m so confused and anxious; I realize now how much of my self I’ve lost. Of course that’s seemed obvious for the past two years; but it’s really hitting home now.

On the one hand, Freud says, there is healthy or natural mourning, that involves the full experience of grief for the lost object, especially bringing up memories of the lost object. I have many, many memories now of the times when my body functioned; they’re around me all the time now that I’m at home—replacing a light bulb or cleaning up the garden or pruning our big grapevine, which we’ve always done during the January thaw. There’s always mourning, even though I’m also elated in trying to get some physical sensation and motor function back, recognizing that you can get things back, even this long after the injury. What’s curious is that you can have two seemingly incompatible experiences at the same time, an intense, driving will to live on and keep working for physical as well as emotional and social-contact improvement, and a deep, inconsolable mourning for what’s gone.

Freud also recognizes pathological mourning, which he says occurs when the subject holds himself responsible for the death that has occurred, or denies it, or believes that he is influenced or possessed by the dead person, and so on. Here’s where the Lama’s advice is so important, don’t ask why the accident happened; otherwise you get all tied up in self-blame. It would be easy to be crazy about this, pathological: did I do something to deserve this fate? Why me, God? Job’s comforters, as we mentioned earlier, had lots of these answers: we’re all sinners; you deserved it; you must have done something wrong. But once you go down that road you never get out of that box, the retreat to self-blame.

The more central issue is why exactly one finds oneself crying, either inside or outside, for all the things that home reminds you of—of course you’re crying about the lost object, that part of yourself that is gone, essentially much of what you were, if what one is is partly a function of what one is able to do. That partly explains why you cry, and also what antidotes there are—that’s in part the role of teaching for me, it’s a way of somehow doing something constructive with what you’ve got left, which may, in fact, if you work through the mourning process, involve a finding of oneself in a different way. There are new connections, for instance: Certainly I would not have said there are millions of us until I became one of us, and that’s why a place like Neuroworx, a genuinely forward-thinking outpatient rehab facility, is so important for people, because those people are discovering others they knew nothing about. Who among able-bodied people has disabled people much on their radar screen? Only a few, I think.

Freud also differentiates normal mourning and pathological mourning from melancholia, where the ego identifies with the lost object. But this is in a way the biggest challenge in my situation: after all, what’s lost was me, my body and my capacities for activity; why wouldn’t the ego identify with these things? So is it possible to do normal mourning, “healthy” mourning, when after all you can’t really separate yourself from the lost object: that lost object is (was) after all you.

Here’s where the advice of the Lama has been so relevant, when he came to visit me in the hospital not long after the accident: the body is nothing; the mind is everything. As you may remember, it was tremendously consoling at the time. If I could still believe it fully, mourning and melancholia wouldn’t be a problem. I try; but it is hard to lose one’s body, even if you still have your mind.

Meanwhile, Peggy has been facing loss too, over these last two years and of course continuing on now. She says she’d been looking idly while staring at her computer at the Nature Conservancy’s website of Best Nature Photos of 2010; almost all of them are taken in kinds of places we’ve been, but won’t be going to again. And she confesses that she has a secret stash of some of the many travel and trek brochures that come in through the mail: glossy brochures with photos of mountain ranges in Chile, Buddhist temples in Cambodia, picturesque medieval villages in France and Italy.

Is this about loss? Is this about the anguish of not being able to go there anymore, at least not as the couple we once were? We can’t; that’s a simple fact, and if we were to try to do so it would be so encumbered with equipment and backup precautions it would hardly be worth the effort, and in any case we would have lost the spontaneity we once enjoyed. After all, I think we narrated earlier, when we first knew each other we’d sometimes just put our sleeping bags and backpacking gear in the car and drive out to the main highway, and then decide whether to turn left or right, south or north, then west or east after that. There are wonderful mountain ranges in every direction from Salt Lake City, so it didn’t make any difference which way we went. The deliciousness of complete spontaneity was always part of the pleasure.

We can’t do that anymore. So what, Peggy says. Someone whose wisdom she’s come to admire said awhile ago, about all those places like mountain ranges in Chile, Buddhist temples in Cambodia, and medieval villages in France, well, after all, you’ve already done that. You’ve already been there.

It takes a long time for this to sink in. You can’t do it in the future; but you’ve done it in the past, when you were whole. Do these somehow cancel out? Does the fact that you can’t do it in the future anymore somehow weigh more than your past experience, no matter how pleasurable and intense that was? That’s after all over, gone. Or is it that we should value what we’ve done in the past more than what we might do in the future, given that we never really know what the future will bring and given also that past experience lives longer with us than future experience will, since future experience occurs closer to our own deaths. Or should we weigh them equally, our pasts and our futures? Traditional philosophical puzzles like this become much more real in a situation like losing your body, but of course they’re also part of ordinary aging, of living through time. So we’re not alone at all in confronting issues like this; they just seem more acute when you realize not just that you can’t do much of anything anymore but that you can’t recover from mourning for your lost self in any of the usual, healthy ways, by detaching from that and going on to something else.

Peggy says she doesn’t keep the secret stash of travel brochures because she wants to go there, but to remind her of what it’s like not minding not being able to go there, the positive side of not needing to anymore.

From Institution to Home

2011-01-01T21:26:00.000-08:00

We’ve been home now for nearly a month, and it might be worth relating some of the details of life here, since we’ve finally settled down so to speak to a kind of daily rhythm—or at least are beginning to settle down to a life which involves daily care for 24 hours a day, 7 days a week. We’ve rounded up a pretty remarkable staff of people who work shifts, 7 am to 3 pm, or 3 pm to 11 pm, or 11 through the whole night until 7 am—sometimes two at a time, sometimes solo. At the moment, Peggy is here much of the time, though this will change a little when the academic semester begins in January. This staff—about a dozen people, most of them young, includes people we’ve trained, people with backgrounds in nursing, people with training in respiratory therapy, and miscellaneous others, like a philosophy graduate student, a former drywaller, former students of Brooke’s, and other assorted amazing types. The schedule fluctuates from week to week, at least at the moment, stretched across the day from 5:15 in the morning until 10 at night, and of course there are various procedures to be done in the middle of the night as well. What a wonderful collection of people—for the most part, entirely engaged in the project of caring well for Brooke. Of course, we’re aware that this is partly due to the terrible economic conditions in the country, and that some of these people—including those with brand new respiratory-therapist degrees—aren’t finding other jobs. We’re also aware that many of the other entry-level jobs out there or jobs at megafirms and big box stores are pretty inhumane—long hours or more frequently too-short shifts, required standby days without pay, firms unsympathetic to illness, and of course low wages and no benefits. Some of our folks are single parents, or people with educations but no jobs, or people in industries like computers or trades like construction that are collapsing. We don’t want to profit from other people’s miseries but we’re aware that working with Brooke, as strenuous and physically demanding as that might be, can be a haven of genuine human concern in an often bleak economic world.

Brooke’s schedule is for the most part much like that at South Davis, except that he is in the wheelchair, rather than in bed, for as much as twelve hours instead of just two or three hours a day—this is very good for circulation, breathing, and overall health. At this point, we have a home care company which temporarily supplies a nurse and three therapists—a physical therapist, an occupational therapist, and a speech therapist, not to mention the shower aide, who come to the house at various intervals during the day. They’re part of the great network of home health care workers who drive huge distances all over the valley, living much of their lives in their cars, another indication of the economic challenges of the times and the poor infrastructure of our health care system that provides home care largely on a temporary, intermittent basis as well as the sprawling nature of American life.

At last, Brooke's at home; that’s the important thing, even though this too has enormous financial impact: we’ll need to personally employ the equivalent of between four and seven fulltime workers to get single and often double coverage 24/7. But it’s time that’s really the issue: time for Brooke’s own interests, time for Peggy’s projects, time for both of us together. At first, we thought we’d have longer blocks of time together, but so far it isn’t working quite that way. At South Davis, Brooke regularly had long stretches of time by himself, in between procedures and checks by the nursing staff—those checks were always done quite efficiently and, unfortunately, without much relaxed time for chatting and talking. Now, it’s quite the other way around—our staff seems relaxed, at home, glad to be working together, but it involves way more time, way more talking, way more at-homeness than the efficiencies required by a cost-conscious hospital environment. So far Brooke’s days have been filled with therapy sessions and the usual routines of cough assist, cathing, bathing, medications, and so on that have to be done on a crushingly regular basis, and Peggy’s days have been filled with the demands of organizing the staff, the supplies, the vendors of equipment and services, the social calendar, and making sure that things run as smoothly as possible, easier said than done. At South Davis, Brooke, who spent about 20 to 22 hours a day in bed, was able to listen to thirty or forty books on tape (nearly all of them books about various periods of history—European, American, Chinese, Native American, Russian, and so on, trying to put the dots together, as he says); now, he’s lucky if he is able to squeeze in an hour or so of listening, a great deprivation. Those books on tape provided a good deal of his intellectual stimulation—that and his various visitors—but a day without them now is way less full, even if stuffed with medical care and staff interactions of all sorts. Yesterday, however, with a little time before dinner, he started to watch his second film—that is, only the second one he’s had time for in a whole month. If you’ve been imagining that his day is spent parked in front of the TV because there isn’t anything else he can do, you’re wrong. A huge amount of his time is spent in nursing care—though we’re gradually getting more proficient in this.

The house itself has finally attained some degree of normalcy. Brooke’s bedroom has some of his favorite etchings on the wall facing his bed, and two beautiful woven hangings on other walls, not to mention that photograph of the Buddha he took at a temple in Myanmar about five years ago, which we mentioned in an earlier blog—the photograph that got him through so much of the really hard times during his vent-weaning periods. The living room has been rearranged to open it up and make room for Brooke’s massive powerchair; he can turn on a dime in it and park facing out into the garden, even driving around the Christmas tree, left from when our daughter Sara and her family visited over the holidays. The renovations that were made while Brooke was at South Davis now somehow seem a natural part of the house: the new front door, widened for the wheelchair; the kitchen remodeled to accommodate the wheelchair; the carpet replaced with one with lower pile so that the wheelchair could drive well on it; the French doors wide enough for the wheelchair to go out onto the deck; the new, enlarged, sturdier deck itself that had to be raised to allow the wheelchair to drive out onto it; the windows replaced in the room next to the bedroom so that there’d be more light; the microoffice converted from a closet that provides a place for attending to the financial aspects of Brooke’s care and other bills and records; the ceiling lift in the bedroom; the decking in the shower for the shower chair, the one fashioned out of a lawn chair and casters; the upstairs room that is Peggy’s retreat; the “green room” as we’re calling it that is intended for Brooke’s caregivers to hang out in so that they’re not underfoot when he’s got other guests or just needs some privacy and tranquility; the modified sidewalk and front porch that allows Brooke to drive up to the house in the wheelchair; the driveway pan that allows us to park the van with room for the lift to function; and more. Despite all this, it’s still home—but with a little touch of memory from South Davis: the kitchen, the microoffice, the green room, and Peggy’s upstairs lair are all partly painted in the same mocha color that was in Brooke’s room at South Davis, a color he lived with for almost two years and never got tired of.

We always assumed that Brooke’s stay at South Davis would come to an end—that he’d leave there at some point, and that, we hoped, he’d come home. What is so scary to him, he said several days ago, is that he is at home, and what that involves. It’s about what the future will bring. It’s all scary to me, he said. I’m frightened, he said. Daily living is hard. Having people around 24 hours a day is hard. It’s the reality of home life that will demand a whole new relationship between Peggy and me, or rather a different kind of relationship. I’m very scared that I won’t be able to bring it off somehow. I mean, this will come to an end too. Well, he said, this is not Buddhist at all. “Living from moment to moment”--I’ve lost that somehow. I’m scared of the imaginary future and what will happen to us, and what it will be like for the two of us to live together in this situation. For example, we’re separated at night—I’m downstairs in my hospital bed, which more or less fills the bedroom, and Peggy has to sleep upstairs in the room she’s prepared for herself. Of course, we’re just beginning; we haven’t really gotten into any kind of fully satisfactory rhythm yet. Everyone said the first couple of months would be the hardest—here we are at one month, just about, and things are getting easier, but they’re far from easy altogether.

But there are positive moments: for example, I decided to come out of my room in the wheelchair yesterday morning and do one-on-one, off pacer, because I thought, this is a good positive start for the day. Then we had a wonderful dinner together, just the two of us, while the care person was in the back room, the “green room,” allowing us some privacy. This was the first dinner like this we’ve had, just the two of us. Just the same, I worried, you have to feed me—how will it sort itself out? I know I’m just being neurotic about this, he said, this life at home will have an end, either in my death or yours, or I may end up in an institution again—a lot of the kind of heroic life I imagined for myself hasn’t happened yet. Instead, we squabbled a bit over stupid little things, just the way couples do; perhaps this is also part of coming home. Now, in my anxiety, it seems we won’t have the time or energy to do anything constructive, only just to get through the health-care stuff. It’s so hard to be disabled like this, in this state, in this chair; I know I’m wrongheaded about it, but it’s also hard to know exactly what I’m wrongheaded about. Even though we’re beginning a urinary-control program, for example, I still feel that enormous dependency, even in trying to achieve something as elementary as taking a voluntary pee, and the feeling of total helplessness is sometimes utterly overwhelming.

Anyway, I’m scared. You know, Peggy, you’re the primary caregiver, that’s because, as someone said, you’re here all the time. Will you resent that in the end? Will my condition really be something that holds you back? I don’t know what I’m going to do. So at the moment home life to me seems fraught with difficulties, despite the fact that our caregiving team is coming together and starting to work really well. When I’m with B. and D. and L. and you, for example, talking about Sir Gawain and the Green Knight, I can’t keep up my end of the conversation very well. Is it the physical distance the big powerchair imposes? Is it the weird sound of my voice? Is it the slowness with which I speak, partly a function of what the diaphragm pacer allows, that gets in the way? It’s hard to talk fast on the pacer, and it’s hard to be quickwitted when you can’t talk fast. Is it just that my mind works more slowly, or is it that my body works more slowly and can’t express what my mind wants to say? My sister used a good analogy: when she was with her husband in France and he was just learning French almost from scratch, though she was already fluent, he always felt he couldn’t keep up at dinner parties. He couldn’t tell jokes. He always went home in despair, that his thoughts were going faster than his mouth could express them. It’s the sense of humor and the appreciation and expression of humor that is most lost. I still haven’t gotten used to being in this physical situation fully and the way it affects communication; mentally, I’m the person I always was, but the two things don’t connect so easily.

Other people relate to me differently too, or I interpret what they say differently or misinterpret their looks. I’m comfortable with the people who’ve been around a lot over the last two years, and for them the wheelchair and the paralysis is just normal now, but for some other people I’m aware that these things make them uncomfortable. I'm sorry; I wish I could make it easier for them, easier for them to come to our home. It’s so different from what I imagined it would be like.

That was last week. We’ve been trying to write this blog for a long time, but in the comparative chaos of reentry into home, we just haven’t managed. Now it’s:

New Year’s Eve: We’ve decided what we want to give each other for an anniversary present—it’s our 25^th anniversary tomorrow, January 1, 2011. Brooke still requires a hospital bed, but we want to get a wider one. Of course, the insurance will only pay for a narrow, single width bed, albeit longer, but because he doesn’t weigh more than a normal-weight person, they won’t provide a bariatric one. So we’ll just get one—this is about marital intimacy, even if that means something different in the context of near total paralysis, proximity is still of paramount importance. And as the song goes, a kiss is still a kiss, even as time goes by.

New Year’s Day: Here it is, a new year, a new decade, and also our anniversary. Imagine, 25 years, plus the 10 years we lived together before that. In total, that’s more than a third of a century. In the wedding ceremony we wrote when we got married, we never made any of the conventional promises, like love, honor, obey: love didn’t need to be promised, since it was already there, and in any case can’t be promised for the future; obedience on the other hand was out of the question. Nor did we recite that traditional line about “in sickness and in health.” Brooke’s injury is you could say a form of non-health, but we’re still here together, whether we promised it or not.

We’ve been making New Year’s resolutions: Brooke, for instance, resolves to learn how to embrace pain. Peggy resolves to learn how to relax with having a lot of people around all the time; she’s starting to enjoy it. She also resolves (though she does this almost every year) to get rid of all the piles of papers and other stuff that’s around the house, since that is now so much more in Brooke’s way. He’d said, When I first got here, for awhile the place was reasonably empty and that made me happy, but now there are chairs and stuff everywhere and I can’t move around among them—I wish you’d resolve to do something with them. I can’t move them; I’m helpless, and I can’t move them. So she resolves to keep the place cleaned up and really spare, and furthermore to welcome being nagged about this. Brooke meanwhile talks about further adapting to the situation we’re in—this might seem like a pretty abstract New Year’s resolution, but it has many details. And there are many positives of being at home: The sense of freedom is much much greater—we can manipulate the schedule, pare down the medications, experiment with off-pacer time and physical therapy, cook our own foods, choose our own bath times, bed times, cath times, etc. and in general design our own lives, even despite the realities of Brooke’s physical needs. And the improvement in Brooke’s condition since he’s been home is so great—better breathing, better movement when he’s doing physical therapy, more sensation, better voice, less pain, decreasing anxiety, better general health. And he spent over an hour today off the diaphragm pacer, just breathing as his normal self.

Must be that the initial terror of being at home is starting to turn around—for all of us.

PS to media note

2010-12-26T14:24:00.000-08:00

In the previous entry about today's TV interview with Ted Capener (5:30 this afternoon, Ch. 7, KUED), I didn't mean to suggest that Brooke is thinking about physician-assisted suicide (at least not in any way beyond reflections on whether life in his situation is so difficult that it would be better not to be alive at all), but only that it's a topic I've been writing about professionally for years. That's what the interview is about. Oh, the irony.

Peggy

Quick media note: Ted Capener interview, Channel 7, Sunday Dec. 26, 5:30pm.

2010-12-24T22:36:00.000-08:00

Brooke’s been home for three weeks now and we’ve been trying to compose something about what this amazing transformation is like, but it’s so challenging that we’ve only managed a paragraph or two.

In the meantime, you might like to know that KUED, Channel 7 in Salt Lake, will be broadcasting Ted Capener’s half-hour interview with Peggy about Brooke and the issue of physician-assisted suicide, 5:30pm Sunday Dec. 26. You see her convictions and watch her unease.

Adapting to Home Life: The Carolers

2010-12-15T22:24:00.000-08:00

Everyone told us that the first month or so at home after discharge from the hospital after such a long time would be the most difficult period of the whole experience. They were wrong. Of course, this isn’t to say it’s been easy—indeed, there’ve been some pretty dicey moments—but only that there’ve been plenty of really difficult moments in the past.

Of course coming home was difficult at first—no matter how diligently we’d prepared, there were still plenty of things we hadn’t anticipated. There were constant fires to put out, about staff, about supplies, about insurance, about virtually everything. But there are also positive things we hadn’t anticipated. People had for instance told us that patients often do better at home because they’re not exposed to the really hardcore germs that inhabit hospitals; indeed, knock on wood, they’ve been right so far: Brooke hasn’t had any kind of infection since he’s been home. And he’s making much more progress in physical therapy occupational therapy than we imagined possible for a long time.

We’ve been moving pictures around, from one wall to another. The bedroom now has a collection of etchings from Brooke’s family, beautiful old etchings; this isn’t anything like a hospital room or a jail or a suffocating, claustrophobic room, but one with real aesthetic pleasure, if you know where to look. It’s also possible to sit in part of the house we call the “nose,” a room that projects out into the garden and is filled with light; this is new, too. Light. Sunlight. We’d had broad-spectrum fluorescent tubes put in the ceiling of Brooke’s room at South Davis, but they never really managed to make the place seem like a room filled with sunlight; now we have that, without tubes.

And there are pleasures that might seem trivial or utterly ordinary, but are just the same real. L. filled an old birdfeeder with fresh birdseed; within the hour, the backyard was full of finches and junkos and chickadees. They have their winter coloration, L. explained about the finches, and they feed energetically on a mild day like this, just before a storm. You wouldn’t think that watching ordinary birds outside a window would constitute a major pleasure, but it does.

Tonight, which just happens to be the two-week mark since Brooke came home, we were visited by a group of young people coming in from the traditional hayride that goes around the local LDS ward every Christmas—we assume it visits people with disabilities, people with difficulties, shut-ins, singing carols, though perhaps they just came to sing to us. There were maybe twenty of them, junior high and high school age, with all the half-veiled curiosity that characterizes kids of this age. They sang We wish you a merry Christmas; then Rudolph the Red-nosed Reindeer; then Silent Night, with one utterly beautiful soft but perfectly clear soprano voice singing somewhat shyly in their midst. To be on the other end of this was extraordinarily weird. Weird. Extraordinarily weird. Neither of us ever, ever thought we’d be on the other side of that barrier, to be the person that well-meaning kids were wonderfully kindly singing Christmas carols to. It’s a moment that in a way crystalizes the entire experience, especially coming home where this kind of thing can happen, the way one’s whole identity has changed, at least in the eyes of other people and to some extent one’s own eyes. It’s like reaching old age in 15 minutes. It’s like being in a nursing home and having people come in and give away presents to the old guys. What does it do for your sense of your own dignity? There’s Brooke in his wheelchair, pausing in the living room as the carolers pour in the door and at a signal, begin to sing and the voice of the beautiful soprano lifts above the group; there’s Peggy standing beside Brooke, her arm around his shoulders at the back of the wheelchair, smiling. What is it like now, when you populate the scene that is an object of embarrassed pity by these young people? Of course, some of them will be in your own same spot in the future, but they don’t know that now, and we don’t know that, and of course we would all hope it never happens.

Peggy can remember scenes like this from her childhood. She can remember going with a school group every Christmas to sing at the Washington Home for Incurables (now of course renamed). Brooke can remember visiting their former house-man/chauffeur in south Baltimore; there he was with his diabetes, in a darkened room in a Baltimore tenement house, both legs amputated. Peggy can remember being taken to visit a woman who was in an iron lung, encased forever in a huge metal cylinder with only her head sticking out, there in the living room of her home just a few blocks up the street from where Peggy lived as a child.

I just have to learn to enjoy being dependent on other people, Brooke says, and I do, mostly. But did you ever think you’d have to have your bowels probed every morning, have to be hoisted out of and back into bed in a sling, need two people to give you a simple shower, that twenty neighborhood kids would come to sing Christmas carols to you as a good deed?

You see yourself from the outside, Brooke says, you see this emblematic scene, but instead of somebody else’s being in the wheelchair, you’re the one who’s in the wheelchair. And it isn’t a dream. How often we forget, forget, forget. Oh my god. Oh my god, Peggy.

Everyone on earth will be there some day, in some hard place like this, unless they die earlier. But of course at 66, when I had the accident, I didn’t think I was young, I didn’t think I was old, I sort of always thought I was 33 or something. I never thought anything like this could happen. You don’t want young people to stop caroling for people with disabilities, people with difficulties, shut-ins. You don’t want them to do it, either.

Actually what you don’t want is to be on the receiving end of it. And more broadly you don’t want disabilities, difficulties, shut-in-ness to happen to anyone, but they do.

You Can Go Home Again

2010-12-07T21:51:00.000-08:00

BrookeBlogCANGOHOME12-6-10.doc [posted 12-7-10]

You can go home again—but sometimes it’s not as easy as that sounds. The move from South Davis back to our home on M Street has been a mixture of elation and challenge. Three or four episodes stand out in the middle of six sometimes calm, sometimes chaotic days, though we couldn’t narrate them all here; suffice it to say that things are, uh, getting better. Home is sweet and there are many friends, but also many other folks: from the home care agency, from the durable-medical-equipment company, from the air company that supplies oxygen, not to mention our own staff, cobbled together from a curious range of folks who are turning out to work as a coherent team—though, we must admit, a fully functioning well-oiled care machine is still a good ways in the future. It has been very, very lively, to put continuous commotion in its most positive light.

But there are some surprises. Our house has been inspected for adequate disability adaptedness no fewer than four times, three by the various hospitals that Brooke has been in and once by an independent nonprofit that specializes in accessibility issues. We’ve also received impressive amounts of expensive, high-tech equipment—a fancy ventilator, a suction machine, an oxygen concentrator, a nebulizer, a humidifier, etc. etc. They’re all in the bedroom, ready for whatever respiratory needs might come up. But, despite all the various inspections and our own long experience with this house, no one seems to have thought about the electrical outlets we’d be trying to plug these items into. Turns out they’re two-prong, ungrounded outlets, and there are only a couple of them in the bedroom. Imagine the tangle of outlet multipliers and extension cords, stuffed down by the baseboards where you wouldn’t necessarily notice them—until one sharp eye did. Fortunately, we found an electrician who came within 20 minutes (!), and by today we’ve come all the way up to code.

On the darker side, Brooke had a dream yesterday morning that also speaks to coming home. He’s had many, many dreams over the past two years; the vast majority have had to do with some kind of movement of the legs—skiing, skating, walking, running. In nearly all of these dreams, the objects associated with the leg movements have been defective—the skis are broken, the skates are warped, or he has had some kind of limp making him walk way out of balance, and so on. In all these dreams, however, he has never fallen, and even in the most precarious situations he has managed to stay upright. These dreams are an obvious reflection of his paralyzed condition, but a condition still seen as only partial. A few other dreams have involved blissful swimming, or diving off a platform 74 feet high and landing like an Olympic diver in the water below; these dreams don’t involve limitation at all. Both kinds are surely compensatory dreams, reflecting the wish to be whole again, and not broken.

Yesterday morning, however, Brooke had a dream that he says was truly strange and frightening, perhaps reflecting not only a kind of farewell to his previous hospital experience but the terror of coming home, even though he’s been aiming for home for so long. Perhaps emerging from the deepest layers of his subconscious, he dreamt that he was a female tigress confined to an extremely claustrophobic room on some kind of death row, along with many other tigers and tigresses, waiting to be executed for reasons he could not understand. (Shades of Kafka, someone remarked.) The room was stiflingly hot, and at one point his jailor or perhaps his hospital attendant came into the room, and he pleaded with her to open the tiny window behind him to give him some air. A slight breeze entered the room, but that alleviated the suffocation he felt only to a minor degree. He could envision the rooms and their other condemnees stretching down the long corridors of this death row. He began to emerge from the dream, but was still in it, and he called out to the respiratory therapist working that night, help help, help. Only gradually did her actual features begin to form in his eyes. She asked questions like, what’s the day of the week? Do you know what your name is? Where are you? But he was still trapped in his dream and could not escape from its grip. Only gradually did his own room—the bedroom he had slept in for the past thirty-three years--become recognizable, and then only very, very slowly. During this whole concluding part of this dream/wake experience he kept slipping back from external to internal reality, a subjective reality that appeared no less real than the world, so to speak, outside himself.

We’ve played with interpretations of this dream. Brooke says he doesn’t want to go into it—let the dream speak for itself, but it’s clearly a dream about confinement, limitation, what it’s like to be paralyzed in a home in which one once ranged freely about, and of course the fear of impending death. Peggy’s reading: it’s about a tigress, a figure of major, elemental power. This is a dream about coming back into power, part of what coming home involves.

What’s it like to be at home, after two years and two weeks away? There are losses: there never seems to be any time to listen to all those enormous books on tape the way there was in the hospital, in between interruptions for vital signs, cough assist, cathing, and so on: everyone who works for us here is here just for Brooke, the only patient, and always has time for him. Of course, these longer interactions are a gain. There are losses in efficiency: we have to check and doublecheck everything that’s done for Brooke, and train each other as we go. But there are gains: training visits from the home care company; they also send an absolutely wonderful physical therapist who rolls Brooke around on the mats, doing trunk work never imagined earlier, and a great occupational therapist and a bath aide who, to our amazement, actually admires our homemade shower chair: instead of plumping for the $2800+ conventional medical shower chair we didn’t think would be covered and is furthermore bulky, ugly, difficult to store, and institutional-looking, we’d fashioned our own out of a reclining lawn chair fitted out with four casters on the bottom ($100 for the lawn chair at REI, and $50 for the high class casters). (There’s a tiny part of the larger story here about the high cost of health care, something we’ve been learning a lot about.)

There are even new realities in social life. Friends have been dropping in, sometimes bringing food, and it is wonderful to see them and to have it be so much easier for them to visit here than to trek up to South Davis, though they recognize that exhaustion can set in pretty quickly. Just the same, we all recognize the progress that comes with being home and the respiratory and physical progress that is still occurring: no longer having to conform to a hospital schedule; being able to be up in the chair for many more hours a day, doing quite demanding physical therapy, to be able to look out the window into the garden, and, most Brooke-like of all, being able to converse with all sorts of people almost all day. It might sound limited, but it’s really pretty good.

It’s late at night as we write this. He’s falling asleep, but he says, wryly, adieu, dear audience, we bid you adieu temporarily, while we catch our breaths.

We’re catching our breaths, in more good ways than one.

Home

2010-12-01T20:51:00.000-08:00

Home, at last.

Details when we have time to breathe, but look in Thursday's Salt Lake Tribune. Brooke says he doesn't want to be a media star--but the simple act of coming home, after two years and two weeks in the hospital, really is news.

Date for Brooke's Coming Home

2010-11-23T20:54:00.000-08:00

Brooke’s got a new date for coming home: December 1. If it holds, it’ll have been two years and two weeks in hospitals.

There’s an enormous snowstorm predicted for tonight in Salt Lake and so no way anybody could (safely) come to visit him. He’s just there at South Davis by himself, watching a film of something (I think The Winter’s Tale) on the TV. That’s like practically every other patient in this long-term-care skilled-nursing facility, alone with the TV. The nurses have always told us that Brooke has more visitors than any other patient in the hospital, sometimes they think more than all the other patients in the hospital put together. It’s astonishing how people can be just abandoned when something bad happens to them, or maybe they had no real connections to begin with. The nurses are great at trying to compensate for this isolation, but of course they have many patients and work to do. Thank you all in every way you have, even by just thinking about him, for making Brooke’s life for the past two years something different. Wish we could do this for every other patient in places like this.

Cognitive Dissonance

2010-11-21T20:51:00.001-08:00

A day ago, a psychiatrist friend of mine visited me, and I was telling him about the experience of cognitive dissonance that I sometimes have, could this really be me? Could this really have happened? Sometimes I have a flash of the person I thought I would be if the accident hadn’t happened, and that creates a sense of the unreality of the moment. It’s a flash that lasts maybe a second. It used to happen all the time; now it happens more on some days than on others, and on some days it happens very seldom. It’s like looking at a photograph of yourself before the accident—(there’s one at the top of this blog)—and instantaneously comparing it to what your condition is now. Could things have gone another way? This isn’t unique to me, of course; it must happen to anyone who has met with some serious misadventure, some traumatic experience. The difference between other people who’ve had problems—they broke their leg skiing, they were injured in a car wreck, whatever—is that in at least some of those cases the two dissonant flashes— me now, and me before the event—will gradually resolve. For someone in my situation, though, with permanent damage, I guess these flashes of dissonance will be a permanent part of life, flashes that move between one’s actual self and the self one might still have been.

The person you see in that photograph at the top of the blog, who thought he was walking fairly confidently along on a path toward the future but was obviously blindly ignorant of what the future would bring, and the person you see now, who now knows what that future actually has turned out to be—that’s the dissonant contrast. It’s not unlike tragedy, where there’s an irony in what comes to be. Oedipus thinks he’s confidently marching toward the future and has no idea of the catastrophe that lies ahead of him. He experiences cognitive dissonance at that moment of realization, when he finally understands that he has killed his father and that his wife is also his mother, and that this is the fate that Apollo had in store for him. It’s not me. Oh, no, no, noooo, it is me. Of course, I haven’t had a tragedy, just a misfortune, though a really big one; but there’s still a dissonance and irony here.

Cognitive dissonance between paths—this is not the path I would have chosen, but it is a path, bordered by suffering, that leads in unexpected directions and towards unexpected results, and who knows how many other paths there might have been or might be. I said I was tempted by the notion of the future, the lure of thinking about the future. My psychiatrist friend responded very strongly to those words, temptation, lure--one is very much tempted to lose oneself in thinking about the future--lose oneself, that is.

I was able to think a lot as we talked about how one’s notion of the future can sometimes block one psychologically. Thoreau speaks of “living laxly in front,” that is, laxly ahead of oneself, into the future. One of the points of Walden is to somehow be open to the future, whatever may arise. But, of course, fears and anxieties sometimes get in the way.

Some of the anxieties for me now are about things like whether the “BrookeCare” team we’ve been putting together will work, now that coming home is back on the charts again (though we don’t have a specific date), about getting around in the winter, about what a day at home will look like, about how to select the right home-care hospital bed, about what one will be like at 75. These are all the sorts of personal and domestic worries that normal people have, perhaps they’re worse in my case, but they’re certainly like ordinary worries. But these worries are precisely what block one from the sense of openness to possibilities in the future. “Living laxly” and having a sense of openness toward the future—that’s what neurotic projections and excessive worries make impossible. Of course, one isn’t always this way: sometimes I can see a whole range of possibilities in the future, even in my condition. We started to make a list the other day of things I want to do—lecturing, teaching, writing, going to concerts and exhibits, taking the TrailRider out into the wilderness, having parties, forming a meditation circle, traveling—(the doctor says none of these are out of the realm of possibility)—and especially spending time with friends, but when one’s mind is operating on the darker side it doesn’t see these things. Rather, it sees all the problems that appear to be in the way, and all the anxieties that flood around in bleaker moments, when the dissonance is greatest. It’s not at all easy to live laxly; one is often contracted in the tight grip of worry.

The whole question that we fooled around with before, about whether what happened was an accident, that colliding of bicycles, is still with me. Many people hint to me that it was part of some kind of design—everything happens for a reason, they say, as if that were consoling. But there’s a real problem with the notion of “it’s either an accident or it’s by design,” that either/or really trips one up. The truth of the matter is that it’s neither either/or—It’s neither accident nor design but something beyond, that somehow figures in language, or that language can almost but not quite capture, and my friend said, yes, you can only point toward it, and then he suggested the word numinous as a possible word to use, to think about, especially in the sense of creative power, not divinity. What about that wordless something, whatever that is beyond either/or? So we mulled over that for awhile. The Greeks were struggling with this too: was it an accident that Oedipus happened to meet his father on the road, or Apollo’s design? Well, it’s both.

So in what sense could we be talking about a path? Partly, it’s about a road that unfolds before you, depending on how you walk it and whether you let anyone guide you. Oedipus needs his daughter Antigone to guide him after he has blinded himself; but on a path like mine, even as uncharted as it often seems to me to be, I need guides too—not just physicians and psychiatrists and health professionals who know about spinal cord injury, but people who love you, people who can see who you are when you can’t see yourself who you are, who can take you figuratively by the hand and (figuratively) walk with you, if you let them—but you have to let them at the same time as you are creating the path yourself.

Was it design—the accident, the pneumonias, every small and large bump along the way? For the Greeks, Apollo’s whole plan becomes clear: Oedipus’ suffering has meaning. Of course, I don’t think there’s an Apollo up there pulling strings with my future or anyone else’s, but the sense of one’s hardships coming to have meaning when they’re understood as part of a path is still real—even if that path isn’t meant in any religious sense exactly, but a kind of laxly living into one’s own open future, guided in some gentle way as you feel your way along by those who care about you.

****

Condition update, after the pneumonia has receded: Back on the pacer 22 hours a day; can eat everything again, or at least everything he likes; back to energetic physical therapy; happy to have visitors again. Feeling restored clarity, which you can probably hear.

Second Anniversary

2010-11-13T20:42:00.000-08:00

Tomorrow, November 14, will be the second anniversary of Brooke’s accident, and hence mark two years in various hospitals, two years of paralysis, two years of breathing challenges, two years of spasm and pain. It is also two years of the most extraordinary care and concern, more affection and love and deep emotional and intellectual communion than can have characterized practically a whole previous life.

How do you celebrate an anniversary like this?

What I Live For

2010-11-09T20:51:00.000-08:00

Last night, when we were lying together in bed for the first time in weeks, now that Brooke is back at South Davis after the pneumonia and back in his familiar wide bed, Peggy asked Brooke a kind of overwhelming question. We’d been reading Walden earlier, the chapter which Thoreau titles “Where I Lived and What I Lived For”, and then there’d been a e-mail in which someone said something about Brooke’s not having anything to live for. So Peggy asked him, “what do you live for?” just like that. Baldly—but out of real curiosity, since after all Brooke is the only person who could even begin to answer it.

Brooke said, well, two things, actually. The first, he said, was more or less Nietzschean, something about the will to live, this strong desire to keep going, not to give up. Something completely elemental, basic, not really intellectually examined much at all, just a basic instinctual desire. It has driven him from the very beginning, he said, even though there have been times it was eclipsed by pain or anguish.

The second, he said, has to do with making other people happy somehow, bringing some kind of gift into other people’s lives—even though the situation he is in would seem to militate against any kind of happiness or capacity to give. Yesterday, even though he’s still on the ventilator again and has a nasogastric feeding tube, he managed to teach the final session for his OSHER class on Walden. Doing the class at all felt like a kind of gift he could give the students, he said, and the students certainly seemed to see it that way. Some of what he sees as bringing gifts to others involves allowing them to see the joy [his term] of just living, expressed in the tone of his voice and the energy—difficult to summon, but real—he brings to something like this. Then there’s writing, the pleasure of collaborative writing, like this, 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. Of course, just living isn’t always a joy—it’s sometimes sheer hell—and he’s often out of energy, but just the same these “gifts” are real, something he is sincere in wanting to bring to others. It’s a kind of teaching, he says, not just from books.

The phrase “support system” is something of a cliché, grossly overused in some clinical contexts, but Brooke says he could not have gone through what he has in these now nearly two years since his accident without the support he has had from family and his extraordinary collection of friends. We have heard of people here in this hospital who have absolutely no one, or very few people who ever come to care for them or to love them. We heard last year about a wife who muttered angrily, within her husband’s hearing, why are you taking so long to die? We hear of desertions by husbands, by boyfriends and girlfriends; and while the nurses don’t talk about other patients, thanks to HIPAA, some stories still travel around. Families don’t visit; patients lose their friends; people living here are sometimes consoled only by their television sets. In fact, the staff sometimes serves as virtually the only human connection for some of the residents, including both the adults on this floor and the babies and children on the floor above. But however important these things are, what’s often overlooked is the way “support systems” can work the other way around. Brooke treasures the “support” people give him, but part of what he lives for, he says, is to give something to them. This isn’t sappy; it’s about how meaning in life comes to be. It’s a two-way thing, not just one-way, and it’s the two-way part that underlies much of what he lives for.

Early on we described a meeting with our friend Lama Thupten, which was enormously significant in the course of this journey. One of the things he said right off the bat was “The body is nothing; the mind is everything,” and although this bald statement may seem somewhat hyperbolic, it has turned out to be oddly true in Brooke’s case. Last night, reading the Conclusion of Walden with his class, we talked about Thoreau’s view that physical journeys—to Africa, to Japan, to China, in search of giraffes or whatever--are nothing in comparison to journeys of the mind, exploring the inlets and bays of one’s own inner self. Be a Columbus exploring new continents and worlds within you, Thoreau says, alluding to a late passage in Byron’s Don Juan, opening new channels of thought. Towards the end of the Conclusion, he remarks that if his world were as limited as that of a spider confined to the corner of a garret all his days, the world would be just as large to me while I had my thoughts about me.

What do I live for? Partly just to live and not give up; partly to engage in the giving and receiving of interaction with people you love and come to love, and partly to explore one’s inner self. At one point in our conversation last night, he said, this may seem outrageous to you, but I think I’m happier than I’ve ever been. But then he quickly said, it isn’t always that way; sometimes it’s really, really hard.

Aftershocks

2010-11-06T19:06:00.000-07:00

A major earthquake is usually followed by a number of aftershocks. Two nights ago, while Peggy was at a conference on end-of-life issues at Cold Spring Harbor having dinner with, among others, James Watson, who still remembers Brooke from many years ago, two friends of Brooke’s were at “dinner” with him in his room at South Davis. Of course, because he hasn’t yet passed the swallow test to determine whether he can eat without aspirating, he isn’t allowed any real food or drink yet. But he is supposed to practice swallowing, to retrain the throat muscles that grow flaccid when they weren’t being used all the time he was in the hospital for pneumonia and the immediate aftershocks of dehydration and excessive use of painkillers that followed.

The two friends and Brooke devised a game: they staged an imaginary meal, designed to let Brooke practice his swallowing exercises. There were supposed to be 82 courses: appetizers, cheeses, wines between courses, red snapper Veracruz style, root vegetables, interspersed with different wines and occasional champagnes, with of course sorbets to cleanse the palate between each course; there was a game course with venison; roast lamb with sage and rosemary, delicacies under glass, and much, much more.

Suddenly, in the middle of this repast, an alarm went off: it turns out that the tube that travels in through Brooke’s right nostril to bring in the liquid diet had gotten plugged up because one of the medication tablets hadn’t been crushed sufficiently. The nurse made various attempts to unplug the line; so did the charge nurse, and then a medic—after two hours of trying, using a wire probe and various solvents, including Coca-Cola (something the oldtimers on the nursing staff swear by), they finally got the plugged tube unplugged. This ended about 10:00 at night, while the two friends were loyally watching. But it plugged up again, and two days later that tube was removed and another placed in through the other nostril; this requires placing the tube with a stiff wire threaded through it, which then serves as the contrast for an x-ray required to be sure the tube leads appropriately to the stomach. It’s not a comfortable process at all, to say the very least.

When Peggy arrived back from her conference—a nonstop trip from JFK straight to the hospital—Brooke was in huge distress, sweating profusely, in extreme discomfort, still saddled with the vent, waiting for the results of the confirmatory x-ray. After a bit of prodding to get the results, showing that the tube was indeed positioned correctly, we could relax a bit, and Brooke managed to enjoy the afternoon with another friend, one describing himself as a three-ring circus of potential diversion for Brooke.

But as we sit together in the evening, what’s apparent is a sense of frustration and perhaps even anger with at least some of modern medicine. True, modern medicine made it possible for Brooke to survive the pneumonia, and certainly would not have otherwise; surviving is the main thing. That was the earthquake, the pneumonia treatments; but it’s the aftershocks that irritate. The fancy hospital bed that, however, you couldn’t really sit up in, and so found yourself lying in the same abjectly supine position for a week; the excessive dehydration, just one of various ways of trying to take water off the lung; the introduction of yet another pain drug in order to try to achieve some relief, but at the same time relying on a collection of older ones as well; and above all, perhaps, the absence of a sense that there was some one medical overseer for all this activity, rather than just a series of interns and residents and attendings who change from one day to another in a modern hospital setting. It’s not that there isn’t someone keeping track of what’s going on, but that the patient doesn’t really see this. But what’s really the subject of frustration and anger is the difficulty of comprehending what’s going on, and what to consent to and what not, where to cooperate and where to complain, when one is already cognitively impaired by the very treatment being given. This isn’t of course just a problem for Brooke or for spinal cord care; it’s a ubiquitous problem in much of modern medicine. Brooke says he doesn’t think the effects of those pain medications have fully worn off quite yet, but he is far, far more alert and intellectually robust than he was just a handful of days ago. And this is partly what allows him to be mad.

Bumps in the Road

2010-11-03T21:11:00.000-07:00

Brooke’s back at South Davis after a sometimes fraught experience at the main hospital recovering from pneumonia and sepsis. The good news is that indeed, he is recovering, and while he’s back on the ventilator (in addition to the pacer) temporarily and for that matter is still being tube fed, he’s recovering. The bad news concerns the various bumps in the road along the way, including a dizzying crash due to dehydration and the cumulative effects of too many pain drugs. Suddenly, it seemed, Brooke wasn’t there at all, cognitively speaking: completely confused, intellectually vacant, with a fixed stare and tiny pupils, muttering incoherently. It was terrifying to those around, to think perhaps that even after he’s lost the use of his body, he’d lose his mind too. But gradually, gradually, he has begun to return to lucidity, one small increment at a time, first being able to repeat words he was hearing, then being able to put a few words together himself, though often interspersed with mumbling and babbling, then sentences. Then he asked people to read to him. And then he asked to listen to Walden. And now come actual ideas and real interaction with other people. And now, this evening, as he’s back in the same bed in the same room at South Davis, being cared for one among his many favorite nurses, things are fitting together. He still has some work to do—getting back off the vent, passing the swallow test so that he can resume oral intake, strengthening his voice, getting back to physical therapy, and much more—but, at least, he’s back to it. He’s worrying about his course, as usual. And now he’s even thinking about his plans to teach The Winter’s Tale in the next OSHER semester, starting in January—even before he’s finished the makeup sessions for his current course on Walden that he missed during this rather mountainous bump in the road.

Death and Reunion

2010-10-29T20:39:00.001-07:00

A few months ago we wrote an entry about our dear friend George Wenckeback, whom we called Bono, the entry with the great picture of Brooke with Bono at his wedding. Tonight Bono’s wife Diane called to say that he had died. You could hear it in her voice even before she told us; we’d known it was coming.

Bono had been diagnosed with a rare, aggressive cancer eight years ago, and at the time given six months to live. He’d gotten five really good years, and then three years of pain. Bono was a great model, a man with an extraordinary will to live, genuinely extraordinary. He’d survived long beyond what was expected, and he kept surviving and surviving and surviving, even again these terrible odds.

This blog entry is a personal one for us, but we also want to mourn publicly Bono’s death. Hardly any of the readers of this blog knew him, we assume, since he wasn’t a friend from the usual circles of Brooke’s past, but that doesn’t make any difference; the death of a beloved friend can be shared by all of us.

By an odd coincidence, I celebrated my 50^th prep school reunion today with my former classmates. The school is in Lakeville, Connecticut, two thousand miles away. I’d hoped to be able to travel there—we’d begun making arrangements as long as a year ago—but in the end we did it by skype. Moved by Bono’s death, it leads us to reflect on how many classmates have already gone, how many couldn’t be there, but a huge proportion of the class still was.

It was a delight to see these faces: some of them faces I last saw 50 years ago, when we all graduated; others are faces of friends I still see frequently, and who’ve come to see me in Utah. One of them had just come back from visiting a classmate, C.C., we’d both known well who now has advanced Alzheimers—he’s gone, he said, several times, as if it were impossible to believe, he’s gone. He’s gone. My friend pointed out that while C.C. still has a body, he has no mind, and while I have no body, or at least no functional body, I still have a mind. That’s what’s made all the difference to me, to be able to read, to think, to teach, to teach a book as demanding and deep as Walden. But, oddly, Bono—the old friend who has just died—doesn’t seem to be gone. He seems to be still present, or, rather, what he represented is still present, that extraordinary will to live against all odds.

Someone from the 50^th class reunion joked about getting together again at our 75^th. Of course, we all know that almost none of us, if any, will still be alive then, and when I see these faces on the computer screen via skype, it’s like a time-slice of the present, but which foreshadows the future as well as remembers the distant past. It’s true that the death of a beloved friend can be shared by all of us; but the future deaths of our classmates and beloved friends can be shared by all of us now, too. This isn’t macabre; this is just a simple fact, that in celebrating a 50^th reunion, even if what my former classmates are seeing on the screen is a motionless guy in a wheelchair with a feeding tube sticking out of his nose and I’m seeing guys who’ve kept themselves in pretty good shape and look like pictures of success, enjoying cocktails in their sports jackets and ties, the deaths of beloved friends will be increasingly mourned by us all. It’s a cohort of classmates moving through the age spectrum together; that’s perfectly natural, and we all know what will be coming. We are the friends who will be mourning each other, and even though Bono wasn’t part of this group, and even though C. C. isn’t fully gone, still that awareness of finitude for all of us is what this day of now-mourned death and skype-celebrated reunion brings.

Step Down: From the MICU to the IMCU

2010-10-27T23:32:00.000-07:00

Brooke’s condition has improved enough to be transferred from the MICU to the IMCU, acronyms that label the unit of most intense care and the step-down unit that provides intermediate care. This might seem like progress; but there are still challenges. He was (by his own account) going crazy yesterday, when he was required to have the cuff on his trach fully inflated and so couldn’t talk at all. He was desperate, anguished, fearful, depressed, and I think it’s fair to say existentially frightened, since it felt not only like going backwards from the MICU but robbed him of his greatest asset and strength, the ability to communicate. It was awful to watch, and surely more awful to endure.

But the unit put a solo nurse on with him last night, and then changed his medications and ventilator settings today. He’s been perking up throughout the day, and tonight, just before bedtime, a friend—the assistant for the OSHER class he’s been teaching—is reading aloud to us from Walden, preparing for class next Monday. Brooke looks as if he’s peacefully asleep, but actually just has his eyes closed while he listens, intently. She reads; he corrects her pronunciation. Vitiate, for example, not vittiate. She remarks on how extraordinary it is that he’s paying this close attention when he’s been so sick, but he keeps right on going, letting her read, commenting on the text, demanding keep going. Brooke has all of Walden memorized. (He protests this characterization; he insists, “I just know my way around it.”) They’re reading “The Pond in Winter,” describing Thoreau’s soundings of the pond, and then the section on cutting ice, and Brooke is talking about the ways in which ice was cut from Walden Pond, sometimes as much as a thousand pounds a day, and shipped all over the world including to India, to ports Alexander only knew the names of, but never actually reached.

It turns out Brooke’s got the footnotes of the scholarly edition pretty much memorized too. And, it seems, he’s getting pretty much back to where he was before. The doctor apparently says he can expect to go back to South Davis this Friday or Saturday, to regain enough strength after this pneumonia to come home.

But Brooke is already thinking about how to teach his class there if he can’t do it this week in our living room.

Either way, he says, he hopes the class will come to some consensus about this enigmatic chapter. “The Pond in Winter.” I never promised this class an easy book, he says, It’s what takes us out of our lives of quiet desperation. It’s the real thing. And this accident, it’s what also takes us out of lives of quiet desperation: it’s about suffering and pain opening up friendships. It opens up worlds and worlds, and Walden only complements those worlds it opens up. It’s the perfect book for this situation.

Thoreau says he went to the woods to face life squarely, to live life deliberately. I didn’t do this deliberately, but now that the accident has happened, I’ve wanted to face life squarely too; it’s like a scimitar cutting me in half. And here I am, living, breathing, with my dear dear friends. This is the real thing. This is not a joke. I have to keep reminding myself. There’s nothing to think about, nothing artificial; this is the real thing. You try to extract every morsel of meaning out of life, and if you die tomorrow, you will have extracted as much as you can. I treasure my breath, even if it’s painful; I go on teaching, teaching—no, he corrects himself, I go on learning, learning.

In the ICU One More Time

2010-10-25T21:44:00.000-07:00

( From Brooke, speaking with effort around his still-inflated trach cuff in a growly voice):

It just somehow had to happen this way, that I would end up back in the same ICU where I was after my diaphragmatic pacer implant, the medical intensive care unit at University Hospital. You may remember my description of my room in this unit, the one with the television eye staring down at me from the ceiling. I’m now in the same kind of room, right across the hall. Few things have changed. I’ve got a call light this time, rigged up so that I can puff on it by the PT we remember from South Davis so well, Dominic, the clever mimic and teller of great Basque jokes, who now works here. But that’s about the only change. It’s a room that’s completely claustrophobic. I asked my nurse this morning if she’d ever heard of Franz Kafka (she hadn’t), and I tried to explain what Gregor’s room must have looked like to him as he metamorphosed into a cockroach, but I don’t think she understood. (Do you suppose this was entered as “confusion” in my chart?)

So here I am back again, just a couple of weeks before the second anniversary of my injury. I’d been in the surgical ICU originally; this ICU emphasizes respiratory stuff, and with pneumonia, here I am again. It seems full circle, in a way.

In retrospect, I might have known how peculiar my symptoms were on Friday morning, the morning before I ended up back here. I woke up unnaturally chilled. I had a nice lunch at noon, but later in the day I couldn’t maintain any kind of equanimity, despite the fact that the day before had been an exceptionally well-balanced one, one of the best of all I’ve had. I’d done 20 hours on the cap, but when I woke up I was feeling wretched and frozen. I thought it had to do with the impending storm. Then at dinner everything crashed, and I felt really, really sick—dizzy, with slurred speech; I couldn’t concentrate. Fortunately, I had a friend to keep me company while the staff huddled interminably at the nurses’ station contacting the doctor; the minutes seemed to tick by endlessly, and I kept asking my friend where they were. Finally, they came in and told me they’d ordered an ambulance to take me to university hospital for “observation.” By that time, I was somewhat delusional. Now, I only remember the five burly Gold Coast guys loading me onto a gurney, raising the gurney to an almost vertiginous height, and wheeling me out to the ambulance. I also remember one of the night nurses saying to me as I rolled past the nurses’ station, Good luck, Brooke. Then down in the elevator, out into the freezing night air, then hoisted into the ambulance and bagged the whole way to the hospital. But they forgot the suction machine. They asked if they should go back to South Davis to get it; I said no, but in the light in the rear end of the ambulance I could see four of these fellows bending over me trying to calm me down, as I tried to control my panic but of course couldn’t. I remember that it was 5 minutes to 8 when we left, and I kept staring at the clock the whole trip, because I didn’t think I would make it to the hospital at all. I know the road to the university hospital almost by heart now; I know the traffic lights; I know where the road goes down past the refineries, then up a long pitch and past the Capitol, then down into town. At one point I asked where we were, and one of them said, we’re heading up Victory Road toward the Capitol, you take a left at the bottom of the hill. I know every inch of that road by now. Peggy drives this road when she’s coming home from South Davis. For each of us, it’s always long.

I’m in the same Kafkaesque room as before. This time I know the ropes, so to speak. But last time I’d just gotten the pacer, and there was lots and lots of optimism. This time it’s a matter of clawing back from a setback, though things are looking up: the pneumonia is a common pneumococcal one, reasonably easy to treat; other things are falling into place, and tomorrow they’re planning to reintroduce the pacer, my old friend, as I’m weaned from the ventilator I’m on at the moment. What’s next? I expect to be here a few more days, then perhaps back at South Davis until I get back to strength, and then finally home. Today was to have been the day of homecoming—already postponed several times, but still clearly in our sights.

Sepsis and Pneumonia

2010-10-23T22:26:00.000-07:00

Last week might be dubbed The Week of Wonderful Visits, at least if it were the only such week—there were friends from California, the very first friends to fly in to see Brooke after the accident almost two years ago, who’ve visited often since then; there was dinner with a former colleague, who’d been away for the summer and indeed much of the year, but with whom friendship has deepened in spite of distance; there was the extraordinary PT and her father, who regaled Brooke with tales of ranch life in Zimbabwe before the large landowners were kicked out and he eventually sought political asylum in the U.S. (not all these tales were funny, actually), and breakfast with a local friend, which apparently involved two and a half hours of laughter—the kind of breakfast of which the friend later said, that was what I’ve been hoping for for Brooke, the best so far ever.

The next morning, Brooke woke up with his entire skin ice cold, with his blood pressure dropping, and by afternoon was mumbling incoherently. To make a long story short, he’s now in the Medical ICU at the University Hospital, admitted with septic shock and what is assumed to be aspiration pneumonia. He is actually pretty sick, really sick, but that seems to be coming under control with antibiotics and pressors. They’ll place a nasal feeding tube by fluoroscopy in the morning—they can’t do it the usual way, because he had so much radiation for sinus problems as a kid in the 1940s (does anyone remember those days?) that he can’t easily tolerate having stuff poked into his nose. He hasn't had anything to eat in over 24 hours, but a resident we both liked very much explained that humans are quite well adapted to periods of fasting and starvation--so there's nothing to worry about in terms of nutrition for the immediate moment. We're trying to think of it as being in a monastic retreat, though that's tough with the alarms from the drip machines sounding off all the time.

This is a pretty big setback. Obviously, he won’t be coming home Monday. We haven’t any idea of how long he’ll be at the U, then how long at South Davis, or what kinds of residual difficulties he might have. But he is alert again--and discussing Walden.

Not So Fast

2010-10-20T00:10:00.000-07:00

Tuesday night. We’ve just heard from the doctor that Brooke isn’t to go home tomorrow morning, Wednesday, as we’d begun to celebrate, but will be required to stay in until the following Monday in order to make sure that training of our staff concerning the pacer and the ventilator (which he uses at night) is adequate and, presumably, that his condition is otherwise good enough for discharge.

This is a major disappointment—we were both psyched and ready to go forward, and even though it means an immense change in our lives, we were ardently looking forward to it.

We’ve talked about this delay. Of course we’re disappointed—but we know in our heart of hearts, as the saying goes, that the doctor is right: despite all the dedicated training that’s been going on, not everyone working for us knows how to avoid disrupting the pacer, knows how to inflate the cough during CoughAssist, knows how to use the vent correctly. Brooke’s sense of security seems adequate for coming home; but we know that’s not all that’s at issue.

We know there are risks in coming home, where we can’t have professional care all the time. These are risks that Brooke is willing to take; we just don’t want them to be quite as big as the doctor suggests they could be. Thus we’re grateful for someone who’s eager to make sure this goes right, even if it does take a substantially longer time.

Get it right. Not so fast. Monday will be soon enough for now.

Pacer Repaired

2010-10-16T21:23:00.000-07:00

Back to the new normal, now that the pacer has been repaired. Brooke is extremely happy to be off the vent again. Next comes a 48-hour observation period; then we expect homecoming, probably Tuesday morning. We’re all relieved that the pacer failure problem was indeed external—a little problem with one of the leads that comes out through the chest, which perhaps got snagged on something—but it was an exciting repair to watch the doctor perform, rethreading the wires of the errant lead through their tiny connecting pins and then crimping them on. When the pacer was restarted it gave Brooke a good introductory jolt and then showed all four AAAAs on the readout of its battery pack, indicating perfect connections. We all just about cheered. Brooke says the pacer is way more comfortable than the vent, and is now the good new normal again. What happened is apparently a very rare occurrence; and because the thing is now anchored in place, it’s not at all likely to happen to Brooke again.

Some Difficulties in Reaching the End of a Chapter

2010-10-12T21:51:00.000-07:00

The good news is that Brooke is now scheduled for discharge to home on Sunday morning, the 17^th—just short of two years after his accident. It’s the end of a chapter. Over the past few weeks and more, the two of us have been putting together a rather extraordinary team of caregivers, including those with nursing experience, respiratory, and other backgrounds, even drywalling—but all either already trained or being trained with Brooke. Some of these folks we’ve already known, and thought they’d be good; some have responded to ads we’ve placed in various places. Brooke does his own interviewing, with his usual unerring instincts about the qualities people have, and it’s a really great team we’re putting together, even if it includes a lot folks who might seem to be amateurs. It’s on the spot training, and there’s been a lot of it going on.

But there aren’t any straight lines in anybody’s therapeutic experience. There was a rather sobering swerve today that we wanted to tell you about, because it features some rather heroic activity on the part of various people. As Brooke was being hoyered into his wheelchair to go down to physical therapy, the alarm signal activated on his diaphragmatic pacer. The alarm stopped briefly, then it alarmed again, and before long, the pacer showed all four Xs on its readout, one for each of the electrodes implanted in his diaphragm, for “connection failure.” It beeped incessantly.

This is a nightmare scenario for anyone like Brooke who is dependent on a mechanical device in order to breathe—though many other patients are still more fully dependent than Brooke. Fortunately the aides and others who were on the spot when the pacer failed responded very quickly to this emergent situation, and Brooke could breathe on his own without the pacer for some minutes, even though he was somewhat panicked, as anyone would be. One of the aides used an oxygen bag to pump air into his lungs; others tried to figure out what the problem was; then with the alarm still beeping constantly—a rather unpleasant sound under the circumstances—the head respiratory therapist came down immediately to try to troubleshoot the situation. He tried every tactic he could: disconnecting and reconnecting the leads, changing the batteries, etc., but Brooke was eventually put back on the ventilator.

The doctor arrived somewhat later and immediately went to work, examining the wires that go into Brooke’s chest and down to his diaphragm. He’d already contacted the manufacturer of the pacer, right on the ball, and so had a hunch about what might be the case: it was the fifth wire, the anode that connects the circuit that, they thought, might need re-crimping. But what was impressive was the care with which the doctor examined the wires, and the precision with which the manufacturer treated the situation—it requested photographs of the leads, of the connectors, even of the battery pack showing the XXXX reading—and indeed the concern exhibited by everybody involved.

This, coincidentally, was the day the state inspectors were visiting South Davis. They’d already left by the time this happened, but we wish they could have seen this. They’d have been impressed—it is after all just what they should be looking for, but don’t always find, in health care facilities.

As we said, there aren’t any straight lines in medical narratives—there are always unexpected bumps and swerves. This is sometimes extremely difficult to live with, Brooke says, though we both know that we’ll have to live with such things for the foreseeable future. Health care is full of uncertainties; that’s the name of the game. If there’s anything we’ve learned over the past nearly two years, it’s to expect the unexpected, often the unpleasantly unexpected, like infections, like wounds that don’t heal, like pneumonia, like pain. But Brooke had been in brilliant form for the past couple of days too, his trach capped almost all day and on room air, not to mention the intellectual sharpness and good humour he has sometimes lacked—that period of brilliance had been unexpected too, but great. Indeed, his next class on Walden is already prepared in this head, and the thing that worried him most during today’s swerve was whether he’d be able to teach.

He will. He’s absolutely committed to it. And it’s a real swerve, upward.

Leaving South Davis, Going Home

2010-10-07T21:46:00.000-07:00

Last Tuesday morning, we lay in our own bed in our house on M Street, after Brooke’s third overnight home visit. We were having tea—tea latté, actually—and reflecting on what has transpired over the past nearly two years. It seemed as if something were coming to an end and something new was about to start.

Brooke had just taught his third class on Thoreau’s Walden the afternoon before, and that evening friends had joined us for drinks, and then others for dinner. We had a congenial dinner, Brooke in his big wheelchair and others sitting around our new little high table, so we’re all at approximately the same height: a nicely roasted chicken and a gentle wine. Then there were the usual bedtime medical rituals, translated to home, and Brooke slept peacefully, with Julia doing all the night care so expertly and silently that it didn’t even wake Peggy beside him.

The next morning—before the tea latté—there’d been the usual cathing, CoughAssist, bowel care, oral care—but these were over, and we had an hour by ourselves to talk over what being at home in our house and together in our bed represented, before Brooke had to go back to South Davis for a trach change and other care.

Early on, not too long after the accident almost two years ago, we’d said to each other that we can still have a nice life together, and now we were recognizing that that was almost upon us, as we prepare for Brooke’s discharge from South Davis. For one thing, we’d always visualized that nice life together as taking place at home, but Brooke’s been in the hospital for almost two years. Now, we were talking about how we’d gotten to where we are now, almost through this long period of institutional life and on the verge of coming home—probably next week--and how important the support of other people has been. Our anthropologist friend who’s interested in networks of relationships and how communities work across cultures had been talking about how crucial the support for us here had been while Brooke has still been in the hospital, and we were talking about it again. There are all kinds of conventional terms for what that evening was like—“basking in the warmth of friendship,” for example. But these aren’t necessary; my overall impression was just one of extraordinary peace, says Brooke, that evening, at home among a close few of our friends.

Somehow the terror of the prospect of going home, where there’s no continuous professional care and the resources of a hospital aren’t immediately available, has receded, and actually being at home was an amazingly rich and secure-seeming experience. It’s home, after all, although South Davis had certainly become a kind of home too.

But going home means packing up—almost two years’ worth of stuff. This afternoon, at South Davis, Peggy’s been cleaning out the dresser in Brooke’s room. It has four drawers—one for clothes, one for medical items, one for miscellaneous items like sticky notes, marking pens, a corkscrew, and of course chocolate bars. But there’s also a drawer entirely filled with cards and letters, accumulating since the early days in inpatient rehab at the U, and continuing to accumulate here. It’s a wonderful drawer with many missives of affection and love. It filled in to a depth of maybe four more inches during Brooke’s “virtual birthday,” the one in March 2009, with an overwhelming shower of cards and letters, and it’s always been the drawer in which we’ve tucked notes and e-mails and letters too touching to throw away—in recent months it’s been so tightly packed it’s almost hard to open the drawer to stuff anything more in. It’s affection, expressed.

Indeed, there’s a lot of love and friendship that’s been extended to me over the past two years, Brooke says, more than I could ever have imagined possible. But at the same time I’ve learned a lot about my own moral flaws. I haven’t reached Kohlberg’s 6^th stage. I’m not truly compassionate when it comes to the distress of others, and I tend to think of the ways in which it affects my own situation. That’s not good.

For instance, when I hear about C.’s herniated-disk back problem, I don’t feel the deepest sympathy for her; I think about how her injury complicates our situation. She’s one of our caregivers arranged for when I’ll be home, and now she won’t be able to come. When I think about it more, I have more sympathy for her, indeed empathy for someone in pain (which I know so well), but I haven’t yet achieved that condition of moral elevation in which I can care only about her pain, not mine. I was thinking more about how are we going to fill in this space in our lineup of people?—that’s an awful thing. I’m afraid I’m selfish in that regard. It’s true that my situation requires 24/7 help, but for her, it must be awful, a herniated disk. That’s a terrible thing, with real pain. My heart should go out to her, fully, but it doesn’t go out far enough. So I have not reached a level of outgoingness that I should have reached; there’s still too much self-concern.

This is a religious moment. I’m not telling you this for the blog. I’m just telling you this; it’s what I think about in the middle of the night. How to be a better person. It’s like recognizing all the times you just went about your merry way, disregarding the sufferings of people around you, who lost their children in automobile accidents, or who are losing their wives or husbands to cancer or dementia or other awful diseases, or any of the myriad other ways real people’s catastrophes occur, and I don’t even notice. Or if I notice, I don’t do anything. Or if I do anything, it isn’t much, or isn’t enough. There’s always more one could and should do.

I should have sat down for an hour to compose a letter instead of going on a bike ride, about five years ago, when one of my colleagues’ daughter died of a sudden heart attack. I still regret not doing this. I can see what it would be like to be a good person, but I’m only about halfway there. It makes me ashamed.

Peggy asks a question: But Brooke, you of all people, with the pain and respiratory threats and paralysis you suffer, how can you even imagine that you ought to be primarily concerned with the sufferings of others, when yours are so great? Isn’t that what people would say?

Well, they can say it, Brooke answers. But I don’t think they’d be right.

Writing Classes Read the Blog

2010-10-01T03:28:00.000-07:00

This week Peggy taught guest sessions for the students in two of photographer/writer Steve Trimble’s Honors writing classes at the University of Utah. These classes are focusing on writing concerning personal experience, and it’s for this reason that she was asked to visit and the students have been asked to read portions of this blog.

It’s a remarkable experience, I must tell you, Peggy says, to be in the company of people who’ve been asked to read this blog, but who don’t know Brooke, who are much younger in age, and who for the most part don’t have experience that is anything like his—but who pose often extremely interesting questions about it. Steve has asked the students to write to this blog this week, so this little entry serves as the posting-place for their comments.

To the students: I hope you’ll each post some version of the questions and reflections you raised in class, and of course more. Brooke will read it. There’s no need to offer platitudes; say something about what reading about his experience jostles in you. To blog readers: Just click on the tiny word “Comments” below this entry and you’ll get to see something of what these sometimes extraordinary writing students have to offer.

Returning to Teaching

2010-09-26T21:20:00.000-07:00

Last Monday, Brooke taught the first class he has given in two years, since the week before his accident. It’s on Thoreau’s Walden, a book he says that if read closely and attentively enough, can completely revise your ways of thinking, not just in the chapters “Economy,” “Where I Lived and What I Lived For,” and “Reading” that he’s covering tomorrow, but throughout. While his former English-Department colleagues might quibble, Brooke says it’s one of the best examples of the sublime in literature anywhere.

Teaching Walden is a double milestone. He’s teaching the class, and he’s coming home for the day (and the night) to do it. He’ll do that every Monday for six weeks, or until he’s ready to come home for good. We haven’t been ready to brag about how well the first class went, but perhaps after tomorrow’s session we’ll be able to tell you some of the details. It is a milestone, a big one.

Hope Feeds Life: On Time and Expectation

2010-09-18T20:53:00.000-07:00

As the prospect of Brooke’s returning home comes closer, we’ve been reflecting back on some of the ironies of our experience of time and expectation over the past year and ten months. First of all, it should be obvious that we never expected Brooke to be in any hospital facility for so long, although we know there are people who spend much longer, sometimes many, many years or their whole lives in places like this. (We see some of them here.) Perhaps their experience is similar to our own, never really expecting what turns out to be the case.
When Brooke began to emerge from the spinal storm that normally occurs after spinal cord injury, when there’s no feeling and no motion below the level of the injury at all for five weeks or so, we had hopes of fuller recovery as some sensation and some motion began to return. Brooke remembers rumors of the doctors getting together and saying, he’ll breathe off the vent. He remembers having a roommate who could operate a manual wheelchair and was able to go to the bathroom by himself, and thinking, that’ll be me in a while. He remembers thinking that he’d only need about four packages of Gillette Mach 3 razor blades to get through the whole thing. He remembers Dale Hull walking into the room, on a cane yes, but walking; Brooke remembers thinking if I could just will my legs to do this I could, all you have to do is think about walking, imagine walking, and you’ll be able to walk. I imagined our favorite local hiking trail, he says, the one just four minutes from our house, up above Terrace Hills along the Shoreline Trail—I imagined it step by step, I imagined using my hiking poles, one after the other, I imagined the various turns in the trail, the views out over the valley, the scrub oak, but it would only last two minutes or so, and nothing happened with my legs.
And we thought it would take just a short time to get home. We had a discharge date in about two months. That’s what motivated working so hard. Then we discovered that “discharge” didn’t mean discharge to home; it meant discharge to a skilled nursing facility, South Davis. Nobody ever disabused us of any of the false beliefs we had, even though they were perfectly obvious to all. We had no idea of what was coming.
And everything was slower than we ever imagined, and more punctuated with setbacks. And there were institutional slownesses to reckon with too: we heard about the diaphragmatic pacer three-quarters of a year before it was finally implanted; we heard about the FES bike ten months ahead of its arrival at South Davis, and so on. Hope—hope of recovery—kept feeding life, it kept me going, Brooke says; I kept thinking, if only I work a little harder I’ll be out of here. That wasn’t bad, he says; that’s the positive thing about hope, even if it turned out not to be entirely or even nearly true.

Among the other things Brooke remembers from those early spinal-storm days and afterwards was thinking that he’d be able to teach his OSHER course starting in early April. That’s two Aprils ago now.
Now, this coming week, he’s actually planning to do it, a six-week course scheduled for Monday afternoons that will meet at our house with a maximum of ten students. Even that will be an enormous challenge, not only a respiratory challenge—he’s been working with the speech therapist to be able to read Thoreau out loud for twenty minutes in a row—but also a mental challenge: because he can’t pick up a book and leaf through it, he has virtually memorized the entire thing by having friends read it and listened to tapes.

Like many, maybe most teachers and professors, we’ve always had teaching-anxiety dreams. They’re those dreams about forgetting what room your class is in; about taking the wrong text; about not having read the material for the class; about not even remembering what the course is about at all. You wake up from those dreams in a cold sweat, and sometimes even laugh a little bit afterwards, so predictable and familiar they are.
This time, though, Brooke says he hasn’t had any teaching-anxiety dreams. Perhaps the truth is that there’vew been so many other anxieties, so many delayed expectations, so much astonishing elongation of time, that garden-variety teaching-anxiety dreams just don’t have any place.

“Informed consent” is supposed to be the name of the game in contemporary medicine, where the patient is entitled to choose whether or not to accept various medications, procedures, surgeries, whatever. The patient is assumed to be fully autonomous and to have full information about the risks and benefits of whatever treatment is proposed. This principle of informed consent is observed in many ways. For instance, just last night Brooke was refusing to take a specific drug at a specific time: he’d changed his schedule on his own to Lunesta, the sleeping pill first, then the anti-anxiety drug Klonapin second, though he’d been taking Klonapin first, then Lunesta for some time. Now he wasn’t sleeping well. Peggy thought the Klonapin should be earlier, the Lunesta later. She said so; Brooke insisted no. The nurse listened entirely to Brooke express his refusal and didn’t argue, didn’t try to persuade him, but when Peggy explained her reasons for reversing the order of the two drugs, Brooke eventually smiled and said, that makes sense. Then the nurse smiled too; clearly she’d also been thinking that the reversed order made better sense, but wasn’t about to try to go against his expressed wishes in any way.
But that was just about the order of pill-taking. That isn’t really a big deal; it’s just about how to get a little more calm and a little more sleep than you’ve sometimes been getting.

But the biggest deal, namely what lies ahead in general, isn’t something that’s been a matter of informed consent at all. We haven’t had any realistic idea of what lay ahead, beyond a few people sagely muttering it’s a long, long road, and no occasion for making a choice about whether to venture out on that road at all. How you’d make that choice it’s impossible to know, perhaps, but there’s never any sense of a choice to begin with.

Part of the problem has to do with what sorts of information you get and where you get it, and how reliable it is. For example, there was the mysterious episode when Brooke was still in inpatient rehab of the two doctors who appeared early in the morning, when it was still dark, in February—two Februarys ago. All Brooke could see was their shadows in the dimness of the early dawn light. They were the same height and build, he remembers, like Masters swimmers. They introduced themselves as Dr. so-and-so and Dr. such-and-such (I thought of them as Rosenkrantz and Guildenstern, Brooke says). After some initial small talk and listening to me with stethoscopes, they told me I would be off the vent in no time at all, and they described the stages of vent weaning that would occur at South Davis as if the whole process were as easy as rolling off a log. Of course this gave me enormous hope. These two doctors appeared two mornings in a row, and said almost exactly the same things those two mornings in a row.
Later Brooke mentioned this strange episode to his own doctor and said that all this seemed like something out of a dream, the two doctors like dream figures. His own doctor said no, they were real doctors, but he made no comment about what had been shoveled into Brooke’s head—the idea that he could just get off the vent in no time and with no effort.

But, of course, what they said became an ingredient in the information that is part of “informed consent.” So did a lot of other rubbish. What about the seeming optimism of these doctors? Either they didn’t know anything, Brooke says, or they were playing a trick on me. Most probably, they didn’t know anything or know anything much about my particular case, but in either case they had no business talking. My own doctor didn’t bat an eyelash when I told him about; he should have been furious, but in fact only added to the deception by failing to correct it. On the other hand, not knowing what an enormous and difficult length of time it would take to wean from the vent is precisely why I pushed myself so hard at South Davis. I thought, by June I’ll be free. By August I’ll be free. I still worked, even when I knew the pacer would be going in and render much of this effort superfluous, or so it seems. I’m progressing through the stages those two doctors portrayed for me, but nothing about it has been quick or easy.
So here’s the dilemma, which every doctor recognizes: you don’t want to tell your patients how long it’s going to take or how hard it’s going to be, and you can’t tell them the truth; hope feeds life. On the other hand, we function in a culture in which the prevailing myth, legally reinforced, is one of informed consent. As far as I can see, it’s consent about the little stuff, but not the really biggest things. Would I have given up altogether, or kept going, if I’d known the truth?

TrailRider Expeditions

2010-09-12T23:58:00.000-07:00

Perhaps you remember our efforts with some engineering friends to develop a CarryChair last year, something that could get Brooke outside, into the mountains he’s always loved. That project got interrupted by winter, and in the meantime we discovered something developed by the Canadian organization British Columbia Mobility Opportunities Society, a marvelous construction called the TrailRider, designed specifically for people with conditions like Brooke’s. It was designed we understand by the former major of Vancouver, himself a quadriplegic; you can read the history and, better still, see astonishing pictures of extreme treks at www.bcmos.org. Basically, it’s conveyance that holds a person in a semi-reclining position, balanced over one thick wheel and pulled/pushed by two strong people, known as sherpas, front and back. It can travel over fairly steep mountain trails with rocks, roots, and other obstacles in the way. The website tells us that the TrailRider has taken people to the summit of Mt. Kilimanjaro and to the base camp at Mt. Everest. Our ambitions have been a little less heroic, at least at this point—though they seem heroic to us.

Our first excursion took place a couple of months ago: we went up and down the corridors inside South Davis. Then the TrailRider sat in the corner for another couple of months, while Brooke was having his hard summer of various setbacks. Then two weeks ago we went around the parking lot at South Davis—this time, we were out of doors. Then last week we traveled in the van to a park in the mountainside canyons here in Bountiful, Mueller Park, about ten minutes from the hospital. Last week’s expedition involved getting out of the van, into the TrailRider, then traveling uphill through some paved parking lots and onto an old dirt road, for about a quarter of a mile. It was a huge success, capped by an elegant picnic with smoked salmon, tomatoes with mozzarella, spectacular cheese sent directly from France by a New York friend of Brooke’s, and a special beer. You’ll see pictures attached from both these trips, with more to come. And then today, the third expedition, involved traveling up the main hiking trail at Mueller Park—Shaun Wheeler as the sherpa in the front, Ed Fisher as the sherpa in the back, with Julia carrying the portable suction kit and the stethoscope and the SAT monitor, Michelle Fisher with food and the leash for their very active dog, and Peggy surveying this expedition with extraordinary satisfaction. Up the trail, through the evergreens, into scrub oak and aspens with just the first early blush of fall color—we went almost a mile up to a viewpoint, where you can see out east further up the canyon, into the Sessions mountains, or west out over the entire plain with the Salt Lake and Antelope Island in the distance. Brooke admired the views and the foliage and the open sky, but even more the three raptors soaring in the currents above the canyon.

Later that evening, after this wonderful trip and the visit of an extraordinary new physical therapist who was able to get him to sit upright on the edge of the bed, unsupported for two or three long, long seconds, he said something that would be ordinary for anyone else, but remarkable for him. I feel so energized.

Meanwhile, Brooke is getting ready to teach his first class on Walden, beginning next week. We’re planning to couple this with an overnight home visit, and hope that each week the home visits will get longer—first one night, then the following week two nights, and so on. You can see where we hope we’re going.

PS to The Dinner Party

2010-09-09T22:06:00.000-07:00

I wrote the Dinner Party blog myself, says Peggy—as I realized later. I’d asked Jane if we could post something about the dinner we’d just had together, and then as Brooke was having his bedtime nursing cares I wrote most of the text (this isn’t the way we usually work; we usually do it more closely together); and then I ran it past Brooke. He said uh-huh. I thought I’d run it past Brooke, that is, and but I now realize Brooke was mostly asleep when I read it too him just before I posted it.

We’ve just reread it, together, one night later. Brooke says he doesn’t like the ending—it makes too light of Roger’s problems. Brooke says, “I used to say about my own situation, ‘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. I regret saying those things. There’s something about the ending of the blog about our dinner party with Jane and Roger that disturbs me—it seems to wrap it up with a rhetorical bow, just like some of my earlier attempts to buoy myself. The Dinner Party blog entry ends too neatly, given what Roger has got to go through. I don’t think you can compare back-country ski adventures to the “adventure” Roger is on—it just trivializes it. I don’t think you were aware of Roger watching all the things I have to go through, the kind of pain I was in while you and Jane were talking last night, and 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.’ I want to demure from that account of our dinner. It gives me trouble. It’s a false note.”

In fact, some of the neat endings to various entries in this blog are a problem for me, Brooke goes on to say. There’s such an irony here in this account of our dinner. The hiking and skiing adventures we went on together took a great deal of physical and emotional stamina. But now we in our different ways are both faced with a trial that will take a thousand times the kind of stamina and emotional sanity and physical strength than what we did when we skied together. I keep saying to myself, this is a hundred treks. This is a hundred marathons. Even the FES bike, the new functional electrical stimulation bike that’s used to shock the muscles in my legs into riding in a bicycle pattern, is harder than almost any exercise I’ve ever done. 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.

Would you call Huntington’s disease an adventure? No, the word doesn’t work. It’s the contrast between our youthful selves and the situations we never knew we’d be in, facing challenges beyond petty little ski tours. How could we have known back then that we’d be in this room, going through what we’ve been going through and are about to go through? That’s the ultimate irony, that we knew so little then, we were such innocents, we really did have adventures, and now we have to struggle to maintain enough realism to recognize that that word doesn’t work anymore, even as we all also struggle to try to make the best of what’s going on. These adventures are adventures in a sense, and they’re what Roger and Brooke smiled to each other about, but they aren’t anything like the ones we used to have.

The Dinner Party

2010-09-07T21:41:00.000-07:00

Our friends R. and J. were here at South Davis for dinner again, dinner such at it is. We wrote about them some time ago. Roger has ALS. The first time they came for dinner, Roger looked at Brooke, lying in the bed, on the ventilator, motionless, and said, “That’s where I’ll be in two or three years. If I’m lucky.”
Roger’s physical being is deteriorating, though his organic-chemist brain remains completely sharp. He’s the kind of guy who, when describing the problems that ALS causes with balance, doesn’t talk about trying to stand up so that his center of gravity is poised just so, but about his “center of mass.” He’s been engaged in furious research about ALS and has developed genuinely radical new theories of the etiology of ALS, publishing various papers, even as the disease takes his body out from underneath him, so to speak.
So we had dinner. A dinner party, sort of. Brooke is lying in the bed, but telling Roger that he’s been feeling pretty good and about the progress he’s made in wearing the trach cap for many hours a day, breathing just the way an ordinary person does, in and out through the nose and mouth. The cap makes the trach irrelevant, and makes it more likely that even this last small-size trach can be removed some day. Brooke’s trajectory is slowly upward; Roger’s is slowly downward, and they’ll cross at some future point, maybe in a couple of months, maybe longer, no one exactly knows what’s in store for Brooke or for Roger.
Roger and Brooke had done a lot of hiking many years ago, including the usual hair-raising mountain escapades.
“We’re brothers in adventure again,” Roger says to Brooke. The four of us, Roger, Jane, Brooke, and Peggy, discuss whether it would be more accurate to say, "We’re brothers in adversity." We talk about what it’s like to frame something as an adventure or as a disaster, even if it means death for one and permanent disability for the other. Even though eventual paralysis will take away even his facial muscles, Roger still has this wonderful, infectious smile. Brooke smiles his own wonderful smile too. They agree: “We’re brothers in adventure again.”

Intimacy

2010-08-28T17:19:00.001-07:00

Some of you may have seen the picture in the Salt Lake Tribune of Peggy and Brooke lying in bed, in the closest thing that could count as curled up together. This was during the 24-hour trial home visit that the Tribune covered in the fourth in its series about Brooke (to see the pictures, you can look online at sltrib.com and search for Brooke Hopkins). This was the first night together we’ve spent in the same bed since Brooke’s accident, a year and three quarters ago, and indeed it was in our very own bed. We just want to reflect here on what the experience of spending that first night together actually meant to us.

There’d been lots of preparations for the home visit, including bringing in oxygen tanks and an air compressor and a backup portable ventilator, just in case, as well as all sorts of nursing care supplies. Assuming that it would be impossible to sleep in a bedroom where there’d be so much activity all night long, including CoughAssist and cathing and whatever other urgent things might come up, Peggy had made up a little bed for herself in the upstairs room she’s been constructing as a sort of retreat space, a lair so to speak, for when she’s overwhelmed by the amount of nursing activity, visitors, therapists, whatever is going on downstairs in the house. The little bed was just a mattress on the floor, with some sheets and blankets, not much more, but at least it would be out of the way and quiet.

But she didn’t need to sleep there. When Brooke was finally finished with the bedtime routine—cathing, CoughAssist, oral care, as well as arm splints and boots and nighttime medications and being positioned on a foam wedge to keep his upper body semi-upright, she lay down for a moment next to him. Next to him! Well not exactly next, but close, and not as though he could actually feel it if she touched him, but just the same, next to him.

Though she was vaguely aware of Julia and Mike, who were doing the nighttime nursing, coming in and out from time to time, she was still there in the morning.

In fact, Brooke was unaware that Peggy was sleeping next to him that night until he woke up in the morning, when Mike and Julia came into the room at 5 a.m. to start the bowel care process. For Brooke, it was an absolutely incredible experience to feel Peggy’s body curled up next to his. Yes, it’s true, that unlike the past, he could not reach over and touch her, as he might have when his body was whole. He wasn’t even actually next to her, just nearby. But oddly enough this did not seem to matter to him. Peggy was just waking up at that point, making the little noises of waking up that were so familiar to him. It didn’t even matter that he couldn’t touch her. The one truly active part of his paralyzed body is his left hand, and Peggy slid her hand inside it, interlacing their fingers, and he could feel that—though feeling isn’t normal for him, only light, tingly sensations in the fingers. But he can make it squeeze, and he squeezed her hand in his, and he could feel her squeeze his hand back. Imagine this: your body is 90% unable to move voluntarily, but it does have some sensation—light touch—in parts of it. Just the sensations produced by squeezing Peggy’s hand and being squeezed in return seemed to be everything at that moment, as the two of them lay in their new kind of togetherness in the semidarkness.

Early on in this blog we recalled a moment in which Brooke told Peggy spontaneously, we can still have a nice life together. He wasn’t necessarily referring to a moment like this, but certainly a moment like this one would be part of that nice life. Intimacy is more than sexual contact; it can be expressed in the most subtle and seemingly minor ways, and just the same the sensations can flood you with warmth and affection for the person lying near you in bed. We don’t want to make too much of this, or to claim that it’s better than actual touching or real sex; life is very hard and sometimes a sense of utter bleakness overtakes you, but just the same there is something amazingly real and deeply intimate here even if it might seem too small to notice to anyone else.