Saturday, April 21, 2012

New Salt Lake Tribune story



For disabled Utah professor, there’s no place like home

Wife and philosopher says it’s “unconscionable” not to have a choice.

First Published Apr 20 2012 04:50 pm • Last Updated Apr 20 2012 11:33 pm

Home is where retired University of Utah English professor Brooke Hopkins is, and wants to be, as he carries on with life 3½ years after a paralyzing bicycle accident.

But Hopkins and his caretaker wife, U. philosophy professor Peggy Battin, said Friday they know his ability to live outside of an institution is possible largely because they had financial access to care resources unavailable to most people with disabilities.

Photos
Join the Discussion
Post a Comment

And to an ethicist such as Battin, it is "unconscionable" that social policies driven by insurance coverage and health care reform proposals prohibit some people from choosing where they reside while coming to terms with their circumstances.

"The bottom line," she said, "is we ought to make it possible for it to be your choice" to live at home or in an institutional care facility.

Hopkins and Battin were keynote speakers at the 2012 Disability Studies Forum, whose topic was "There’s No Place Like Home."

Other sessions dealt with the home-care issue from the perspectives of others with disabilities — a deaf and blind woman, a schizophrenic formerly addicted to drugs, a traumatic brain injury victim and the parent of grown children with autism — as well as service providers.

Speaking from a wheelchair, flanked by his wife and one of the nearly dozen home health care workers hired to tend to his needs around the clock, Hopkins said that returning to his Avenues home after two years in medical institutions was more difficult than he expected.

He worried whether home-care arrangements would work. Would he be safe? Psychologically, too, it was hard to see so many things around the house that reminded him of what he could do before his spinal cord was severed in a bicycle collision in City Creek Canyon in November 2008.

Nevertheless, Hopkins said, "whatever pain is associated with living in this chained condition [with] reminders of the past, my feelings of belonging outweigh all of that."

"I belong there," he added.

story continues below

Battin said the decision to move her husband home was frightening for her and other family members as well.

But in weighing the benefits and disadvantages of home care, and of institutional care, she said it became clear Hopkins and the family would be better off with him living under his own roof.

"That way you can live with the person and not just visit them," she said, lauding the extra spontaneity and flexibility available at home. "Just think about what you can do at home that is not permitted or is frowned upon somewhere else."

The couple’s systematic evaluation of their available options impressed Andrew Riggle, who has spent most of his life in a wheelchair because of cerebral palsy but has his own apartment.

But he was struck by Battin’s observation that victims of devastating spinal cord or brain injuries often are young men with little or no resources or health insurance — people who usually end up tucked away in care facilities.

"I’m really happy that folks like Brooke and Peggy have the time, resources and ability to be able to make the choices they do and are able to make it work," said Riggle, a public policy advocate for the Disability Law Center.

"I just wish everybody could be treated that way," he added. "We need to find a way to make their experience the norm, not the exception."

Next Page >


Copyright 2012 The Salt Lake Tribune. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Reader Comments
Reader comments on sltrib.com are the opinions of the writer, not The Salt Lake Tribune. We will delete comments containing obscenities, personal attacks and inappropriate or offensive remarks. Flagrant or repeat violators will be banned. If you see an objectionable comment, click the red "Flag" link below it.
See more about comments here.
What are those badges some users have next to their names?


Add New Comment

Real-time updating is paused. (Resume)

Showing 1-10 of 32 comments

  • A true love story never dies.

    Thank you to both of these remarkable professors.If any two people can bring attention to this and enact change; I believe these are the people who will.

  • gfitzger

    This is one of the best series of comments that I have seen in some time-- thanks to all for the excellent observations. Brooke--Peggy hang in there and we will be in touch in a week or so. G&K

  • FreeMarketsFreeMinds

    Would Brooke Hopkins be eligible for any of this when Obamacare kicks in? I don't think Dr. Ezekiel Emanuel would provide for care or any of the treatment for a person of his age. For those of you unfamiliar. Just google " Complete Lives System" or Great Britains DALY. Those with a disability are valued at 50% of a fully contributing citizen and therefore dollars are not devoted to them. Perhaps you should read the papers co-authored by Dr. Ezekiel Emanuel and Dr. Battin. Wake up America!

    (Edited by author 23 hours ago)

  • beenthruit

    Apparently, you don't know much about what I proudly call "Obamacare".

    I am the Chair of the Utah Disability Caucus.

    Trust me...we would all be better off.

    Get the facts before posting...

  • frank james

    hardly anyone regardless could get all these services. I work with families setting up
    for services and this level is RARE. Obamacare would help the many more who have NO services.

  • fudgiemonkey1

    No, he would not. That's the nefarious underpinning of Obamacare. The papers you cite are chilling and they were Obama's closest advisors on this nightmare healthcare overhaul. The disabled, and the elderly in general, will be allowed to wait in pain or need until they give up or die. Think of the money saved in SS payments when people don't live "so long" - Obamacare is a serious threat to the lives of those getting older or those with disabilities and to those who have serious, very expensive care needed. Let's hope the Supreme Court tosses out this horrible nightmare.

  • formersaltlaker

    Right now you can wait in pain or die in the street if you are working poor. Don't even argue with me about that. I will admit I do not know much about ObamaCare, but you have no idea what I have been through.

  • I've been a
    quadriplegic for 9 years. I've spent about 7 of those years in nursing homes
    and care facilities. When you’re in my situation your options are extremely
    limited on where you can live. I was 18 when I got hurt so I don't qualify for
    most benefits that older people so, that limits my options more. Basically I
    have 3 options live with family, community housing for the disabled and nursing
    homes.

    Opt. 1 living
    with family is a challenge often requiring expensive remodeling or even moving.
    Than finding homecare that accepts your insurance. That's probably the biggest
    problem either they don't accept it or the ones that do are already at capacity
    and not accepting new clients. Opt. 2 Community housing has 2 year waiting
    lists or not accepting applications anymore because their list is over 5 years.
    Opt 3 Nursing homes are a place to eat and sleep and that's about it. Don’t get
    me wrong I'm thankful for them but it's NOT a place to live. Your options and
    actions are extremely limited due to laws and rules. These institutions are
    designed for warehousing the elderly and people with Alzheimer’s mainly. For
    younger people like me it's almost like prison. Your told when to do almost
    everything including eat, sleep and shower.

    Before
    living in a nursing home I was basically normal and probably could have
    accomplished more than I have. Now I have issues I get anxiety attacks when I
    go out in public because for 5 years I had almost no contact with anyone. My
    family and friends couldn't visit often or take me out. I got so use to people dying around me that I can't
    develop or maintain a relationship with anyone including family. Nobody knows
    what it does to you psychologically to wake up with somebody you live with 5ft
    away all day everyday for years that's 50 years older than you and usually
    mentally ill. You’re in a room big enough for 2 beds with absolutely no privacy
    and nowhere to go to get privacy. But the thing that probably messed me up most
    is watching people die almost daily. I’ve woken up to dead roommates more times
    than I can count. Waking up with somebody 3ft away starring at eyes wide open
    and dead there’s no words to explain it especially if you’ve developed a
    friendship with them. The other worse part listening to people scream all day
    for various reasons most of the time it’s just random gibberish others it’s “Oh
    god I don’t want to die!” Here’s my conclusion this is a serious issue in our
    society that needs to be addressed.

  • Professor_Whitney

    Great comment Ronnie, good to see some perspective from someone who has experienced it first hand.

  • Ronnie:

    All I can say to you is thank you. Your perspective is valuable.

Reactions

blog comments powered by DISQUS

Monday, November 14, 2011

Here's the article

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They call it a “fused voice” effort.

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

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

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

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

Consider his morning routine.

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

It’s the same at bedtime.

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

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

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

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

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

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

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

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

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

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

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

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

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

And then there’s the joy of teaching.

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

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

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

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

pstack@sltrib.com

Three Years, Exactly

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

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

Wednesday, October 12, 2011

Art vs. Nature


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

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

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

 

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

 

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

 

 

 

 

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.

 

 

 

Wednesday, August 10, 2011

Catching Up


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

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

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

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

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

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

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

This lime tree bower my prison! I have lost

Such beauties and such feelings, as had been

Most sweet to my remembrance…

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

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

A delight

Comes sudden on my heart, and I am glad

As I myself were there…

…have I not mark’d

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

Hung the transparent foliage; and I watch’d

Some broad and sunny leaf, and loved to see

The shadow of the leaf and stem above

Dappling its sunshine! And that walnut-tree

Was richly ting’d, and a deep radiance lay

Full on the ancient ivy, which usurps

Those fronting elms, and now with blackest mass

Makes their dark branches gleam a lighter hue

Through the late twilight…

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

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