Wednesday, September 30, 2009

Writers on the blog.

Steve Trimble, a well-known Utah photographer and writer and also a longtime friend of Brooke’s and mine, is teaching a couple of writing classes at the university this semester. Somehow he was stirred by something or other he read on the blog the other day and asked me to come to his classes to talk about how Brooke and I each write, separately and together, for it.

I’ve been to the first of these classes—maybe 30 students, packed into a small seminar room on the basement floor, students intensely interested in writing. When I arrived, one of the students was reading from his work, a vivid account of his experience when he was employed as a chain-saw operator clearing land for development--both his shame and sense of sin, as he called it, in cutting down the trees in a particularly lovely, mossy grove, but also his sense of privilege in being the last person ever to see it. I was moved this evocation of real ambivalence and tension between seemingly incompatible dualities, but it also gave me the sense that this would be a group of students who would be sensitive to the seemingly incompatible dualities Brooke and I experience all the time: between ongoing anguish at what has happened to him and the extraordinary moments of insight and love laced through this.

Well, Steve’s got a great class. Their assignment was to read the blog and come equipped with questions. The handful of questions we had time to discuss in class were interesting, thought-provoking, challenging, but it was just a handful, and of course there wasn’t nearly enough time to cover all the questions from all the 30 or so students. I told them how much it has meant to both Brooke and me to read the comments on the blog (particularly to Brooke, since it’s one of the principal forms of contact he has with the world beyond the walls of his hospital room) and how interested he and I would both be in all the questions from all the students, about how they see what we see from their own differing perspectives. The only things I know about them are that 1) none of them keeps a blog of their own and 2) something like two-thirds of them ride bicycles.

So there’s a new assignment Steve is giving to these classes: to post their questions here. Right here. Read on. There could be as many as 30 coming in from this class, and a bunch more from the next one. I imagine they’ll all make us think.

And thanks, Steve.


Sunday, September 27, 2009

Moments of Grace

            For Brooke, life remains pretty hard.  But some moments are good.


            Today, for example, a Sunday, one of the last warm days of summer, he went for a walk (in his motorized wheelchair) with two of the young women who care for him, one an occupational therapist who works on his arms once a week,  the other a nursing student who lives across the street from us and who, we’ve arranged, will be his half-time caretaker when he’s home.


             They’re doing occupational therapy while they’re on the walk.  The OT puts a cookie into his hand; he grasps it, even though his fingers have some contractures, then she helps raise his arm so that his hand is level with his mouth and near it, and he can put the cookie the last bit of the way into his mouth and eat it—in this case, a Lorna Doone.  Then came a piece of melting chocolate—very hard to grab, especially since this time he was using his right hand, the one that’s seen so little activity.   But he made it:  melting chocolate, a fine reward.   Then she helped Brooke write a birthday card to his niece Isabelle, just turning 15—he lettered “Happy Birthday Izzy,  From Uncle Brookie,” and though the bottom part of the card is rather awkward—signs of fatigue in his hand—the first part is wonderfully clear.  Awesome, she said.   She never discourages; she always reinforces, and she would never, never say “never,” the way some other therapists have done.  And she doesn’t act “never,” either, but exhibits the most extraordinary patience in working to eke out function in limbs that have been limp for so long.


            But also along on the walk was our new half-time nurse, Julia, who is already hard at work learning absolutely all the details of Brooke’s care.   Sometimes she’s here at the hospital in the afternoons, sitting with him while he does his trach mask breathing in the wheelchair; sometimes she brings him dinner; sometimes she’s here at 5 a.m., shadowing the nursing staff and being instructed in how to do bowel care.   She’s wonderful.  She too never discourages and always reinforces, and would never say never either.  What luck to walk with these two!


            Now Brooke and I are sitting together in his room in the early evening; it’s a tranquil moment, in which he says he feels completely relaxed.  He had the wonderful company of friends this morning who brought him breakfast with 3 L’s-- a latté, leg massage, and love.      To be sure, moments like this tranquil evening are still pretty rare, and there are moments of unmitigated non-tranquility—he still has temperature-regulation problems, and says that last night he was both cold and hot, so hot at one point that he felt “as if I  were burning in hell.”   But that subsides, and now we’re reflecting on what he has just called “moments of grace,” moments which are lovely in themselves, even in his compromised condition, and even in a hospital setting.  He’s reflecting on the walk this afternoon, maybe half a mile up around the main hospital here in Bountiful, beyond the Alzheimer’s unit, where  you can see turkey vultures soaring in the sky, riding the heat currents; get a sweeping, majestic view of the Great Salt Lake; or ride  over Barton Creek, now ignominiously channeled into a cement culvert but still rushing with fresh mountain water.

The little trio on their walk stopped now and then under shady trees along the way to do a little more of the occupational therapy.  Now he describes them:  They are both “absolutely lovely, unpreposessing.  One is wearing baggy blue jeans; the other a shirt with Japanese designs that she bought at Target, but both with lovely countenances, young women you feel absolutely comfortable with.”  One works with Splore, a company that takes disabled people on trips—she’d just come back from a river rafting expedition in southern Idaho; the other led kayaking expeditions in Alaska this summer.  They both love the outdoors; they both understand why Brooke wants to go on these walks so much, where even in the chair you can get some sense of the beauty of this extraordinary countryside.  One grew up in Vermont and went to Smith, and skated on the same pond that Brooke’s sister skated on when they lived there; she’s 40 years younger, but when she says “Good job, Brooke” it breaks down the age gap totally.  The other grew up in a small town called Palmer, 40 miles north of Anchorage, and at one point lived in a one-room log cabin with her mother and five sisters.  She was a songwriter in Nashville and also went to aesthetician school, where she learned acupuncture and massage from a graduate of Johns Hopkins medical school; now she uses her massage talent for Brooke, with the most miraculous head massages.


            But this account of today’s walk with these two young women is just one of many moments in Brooke’s life here at South Davis where he is enveloped in care.  He remarked a moment ago, I’m here among a lot of women, and it is true—while there are many men among the nurses, aides, and respiratory therapists who treat him here, it is an environment of many women—gentle women, caring women, women who are young and those who are well-seasoned,  some who are conventionally beautiful and many who are beautiful in personality,   A very few are tough,  anxious or bored, but Brooke works to know something of them all and they relax.  What’s extraordinary in this environment is not just that there are a lot of women, but that he able as a man to be with women in a way not possible for any ordinary man.  I watched a couple of weeks ago as three put him to bed: the nurse, the aide, and the respiratory therapist: one with the medications, one putting on his drop-foot-prevention boots and the hand splints he wears at night to try to keep his fingers from developing contractures, and one adjusting the ventilator.  It was almost dark--no bright lights necessary for these familiar tasks--and they murmured gently among themselves as they did these things, enveloping him in this gentle, warm melody of care.  They murmured, cooed, as women do, but that they don’t do when men are around.  They didn’t need to be on guard or see this man as a threat, the way an able-bodied man might be seen; Brooke’s circumstances of complete vulnerability allowed him entrance into a world that would otherwise be closed.   This isn’t a sexist remark, and the male nurses and aides here are also wonderfully gentle and caring, but they don’t murmur and coo.

              There was a time more recently, Brooke says, when, half awake, he saw a nurse and an aide come in just at dawn, when it was still half dark in his room. They were standing above me, he says, taking the pillows out from under me where they’d been put during body-turnings in the night, covering me with a sheet that floated noiselessly over my legs with a slight refreshing breath of air on my face, and doing it with the most extraordinary skill, skill that reminded me of Japanese actors in kabuki theatre or the puppet players in bunraki movement (something I’d been talking about with the lama, who teaches movement at the University, when he visited again recently).  All that I could see of these two figures were their profiles in the semi-darkness.  They moved with such skill, piling the pillows and billowing out the sheet that it gave me the most extraordinary pleasure, watching something that was essentially a dance without being deliberate or performed for an audience--two people who had no idea they were dancing and weren’t trying to be graceful, but it made the best dancing of all.  It’s what Yeats wishes for his daughter in Prayer for my Daughter, beauty that’s beautiful because it’s not conscious of its beauty.  In circumstances like Brooke’s, these small reprieves are moments of grace.













Sunday, September 20, 2009

Salt Lake Tribune multimedias

View The Salt Lake Tribune's multimedia presentations on Peggy Battin and Brooke Hopkins:

Tragic metamorphosis: Ethical debates turn personal for U. professor: End-of-life expert profoundly challenged and much changed when her husband is paralyzed in a biking accident.

Learning to live again: Brooke Hopkins struggles through rehab after bicycling accident: Retired U. English professor confronts days of pain and frustration, along with years of memories.

Wednesday, September 16, 2009

Text of Salt Lake Trib story II

In case you couldn't get through to read the second of the Salt Lake Tribune's articles about Brooke, here's the text. The story is by Peggy Fletcher Stack; the multimedia presentation (don't miss this!) is by the photographer, Leah Hogsten.

Here's the link to the story:
And the link to the multimedia:


At 5 a.m., Brooke Hopkins dreams he is swimming through a school of giant jellyfish, right up until the moment a nurse awakens him with a suppository. That's how Hopkins begins every day at the South Davis Rehabilitation Center, where he has been since March. The retired University of Utah English professor broke his neck in a Nov. 14 bike accident and is almost completely paralyzed.

He has some movement in his fingers and toes, but no control over bowels or bladder, chest, thighs, shoulders, ankles or knees. He must be rolled and hefted, swathed and catheterized, poked and pushed. He endures huge swings in his temperature and blood pressure.

Although he has little sensation in his limbs, they often are racked by spasms so wrenching it feels as if he's on fire, or crushed in a vise.

Hopkins can't cough or clear his throat. He can't feed himself, peck out an e-mail or grasp a phone. A ventilator breathes for him, a pacemaker keeps his heart on task and a head-activated wheelchair moves him from place to place.

To the 67-year-old dynamo, such helplessness and limits are excruciating.

A handsome, lanky, Charlton Heston look-alike, Hopkins was physically at ease in his body and always in motion -- striding in front of his British Romanticism classes, scrawling all over the blackboard, trekking in the Himalayas, whipping up a gourmet meal or rhythmically dancing in blues bars. An engaged and engaging conversationalist, Hopkins attracted a multitude of friends. Adored by his wife, the nationally renowned medical ethicist, Peggy Battin, he was a magnet to his stepchildren, sister, in-laws, and the kind of grandfather who got down on the ground to wrestle with his young grandchildren, who called him "Mountain Papa" (their other grandparents live near the beach).

Where is that person now? And where is this trajectory taking him?

One night a Tibetan Buddhist monk in maroon-and-saffron robes swept into Hopkins' Bountiful rehab room and delivered a piece of ancient wisdom.

"The body is nothing; it is ephemeral," the lama told him. "The mind is everything."

Hopkins remembered that sentiment when he saw, for the first time, his emaciated body in the mirror while being wheeled into the shower. He either could be depressed by the sight or celebrate his expanding mental powers and social skills, either indulge in self-pity or confront the challenges ahead with dignity and drive.

"The lama's words came back with their full force," he recalls, "and I understood them for the first time ... and my potential depression lifted."

This is what has sustained and inspired Hopkins all these months. He spends much of his day chatting with people around him. He jousts verbally with a friendly Basque physical therapist and clues into his caregivers' personal dramas. He impetuously offered to pay a month's rent for an aide who was fired. His heart aches for other patients with no insurance or support systems.

When a group of U. of U. colleagues arrives one morning to play the harmonica, standing bass and fiddle in his room, Hopkins grins and joins in. Fully aware of the irony, he belts out -- in his breathy baritone through the ventilator -- the Rolling Stones' classic, "You Can't Always Get What You Want."

It was clear: Brooke was himself, reborn.

Midmorning » Hopkins' 6-foot-5 frame is hoisted by an automated lift from his bed to a jury-rigged stationary bike, which Battin brought from their Salt Lake City home.

Dave Worthington, a physical therapist, places Hopkins' feet on the pedals and holds his knee so it doesn't fall to the side. Slowly, almost imperceptibly, Hopkins' left foot inches forward. As it moves to the top of the rotation, Worthington pushes foot and pedal over the top. Hopkins does the same with the right foot, along with the same help from Worthington. Then they start again. It takes an hour for Hopkins to complete 80 revolutions -- a far cry from the furious pace he pedaled on that terrible November day.

For a long time, Hopkins didn't remember much about his accident. Little by little, snatches of memory have returned.

That morning, he had finished teaching a Mark Twain class and decided to unwind by cycling up City Creek Canyon. He made a giant pot of his famous chili verde for a shindig with his students that evening, strapped on his helmet and headed for the canyon. As he rode down and around a blind curve, another cyclist was riding up and they collided in the middle of the road. The other man's bike was wrecked, but he was not injured. Hopkins was thrown off his bike and landed facedown on the roadside.

He now recalls hearing a scream, "Watch out," and mouthing the words, "I can't breathe."

Within moments, James Richards, an LDS stake president biking uphill, was on the scene, followed almost immediately by Denise Ward, a LifeFlight nurse who works in the respiratory ICU at Intermountain Medical Center. While others were afraid to touch him, Ward rolled Hopkins on his back, began chest compressions and instructed another passer-by to perform mouth-to-mouth resuscitation. Seven minutes later, an ambulance rushed him to University Hospital.

Hopkins remains mystified that one of the people most qualified to help him was instantly on the scene. Was it divine intervention, karma or luck?

Questions of fate often were at play in the Romantic poetry Hopkins spent his career studying. Again, it was Salt Lake City's Lama Thupten Dorje Gyaltsen, originally named Jerry Gardner, who helped him put the matter to rest.

The Tibetan Buddhist advised him not to wonder why the accident had occurred nor why he was saved. Rather, he urged, just accept it and move into the present, however painful it might be.

"It is what it is, he told me," Hopkins recalls.

Besides, there were more pressing matters to address -- like how to breathe.

Afternoon » Hopkins tips back to a 45-degree angle in his automated wheelchair, listening to The Autobiography of Benjamin Franklin on tape and trying not to die.

This is his daily "trach mask trial," during which he is unhooked from his respirator and breathes on his own. Normally, thousands of nerves and muscles move the diaphragm in breathing. For Hopkins, who has only about a hundred of those, it requires extraordinary physical and mental concentration to take a single breath.

When he arrived in the rehab center, Hopkins could stay off the ventilator only for about five minutes, every second filled with dread. It felt like drowning. Panic set in. Time slowed to such a standstill that he asked an aide to hang his Hawaiian shirt over the clock.

The only way for him to ease the anxiety: Take slow, deep breaths and try to empty his thoughts, using meditation techniques he learned in workshops years ago.

"Breathing in, I calm my body and mind," he chants from a tape he heard while driving to the Utah Shakespearean Festival in Cedar City. "Breathing out, I smile at the world."

Meditation training helped but is not analogous to his breathing trials, he says. "I'm here not for 10 days but 10 months. No words can capture how hard it is. It's so long, so incremental, so relentless."

On a good day, Hopkins now can breathe off the vent for about two hours at a time. Days of tearful outbursts often follow.

"You cry because you are relieving something that gets pent up inside you," he says. "But it's not depression."

Hopkins knows the difference.

He first experienced what can only be called clinical depression as an 11-year-old at a Canadian Scout camp. Overwhelmed by thoughts of an earlier childhood trauma, Hopkins spent his days sobbing alone in the woods while the other boys were fishing, canoeing and tying knots. He had no idea what was happening and no way to stop it. Eventually, he would learn that his emotional chaos had a name and spent 15 to 20 years with doctors and psychologists to transcend it.

"I didn't want to die not overcoming depression," he says. "I don't want to die having been defeated by this injury."

Dusk » Hopkins sits with Battin on the center's balcony, watching the sunset over Antelope Island. He delights in the way the sun lowers over the Great Salt Lake in a bright yellow-orange glow. He is warmed by the memory of the couple's many hikes on the island.

Nature long has seduced Hopkins, who spent many happy days and nights in its embrace -- biking, skiing, snowshoeing and trekking -- three weeks in Peru, two in Argentina, five days in Morocco. Never long enough.

"I'm something of a masochist," he says. "I like to stretch my body and psyche at the same time."

That's why Battin began months ago plotting a way to get Hopkins somehow back on the trail -- even if friends had to carry him. Thus was born the Apa Sherpa Himalayan Carry Chair or, for short, "the Sherp."

Battin enlisted the help of Terrell Pool, of Diamond Mold Inc., who mounted a mesh chair on steel girders long and light enough for Hopkins' friends to carry. Hopkins was tied to the chair with bungee cords so he wouldn't fall out.

On the day they tried it out in South Davis' commons room, the five engineers, one doctor and Apa Sherpa, who has summited Everest a record 19 times, felt like "the Wright brothers."

"Where's the champagne?" asked Dominic Echeverria, Hopkins' playful and creative occupational therapist.

Though the contraption needed refinement, Pool was pleased. And he wouldn't hear of taking money for his time or materials.

"We're honored to participate in Brooke's adventure," says Poole, once an English major at the U. "It's a great endeavor."

Later, Hopkins' doctor, Jeffrey Rosenbluth, arranged for his patient to join a group of disabled patients on an excursion to Snowbird.

Hopkins seemed delighted by the chance to experience the outdoors for the first time since November. But as the tram carried the wheelchairs to Hidden Peak, reality slapped him. He nodded toward all the peaks he had climbed and felt a pounding sorrow that he never would ascend any of them again.

"I looked at the trailhead, and I could look out over the mountains," he says. "It was very bittersweet."

With a catch in his throat, he says he hopes the gains of this new life one day will outweigh his losses.

Late night » Nearly every night Battin or friends bring Hopkins' favorite foods for dinner -- Thai egg rolls, chicken with lemon, olives and capers, red lentil soup, Squatters beer. They feed him, chat with him, discuss news, politics and the existential absurdities of American life.

Battin snuggles with him on his oversized bed, collaborating on a blog chronicling the experience.

"What replaces the physical intimacy we had is a kind of emotional intimacy that comes from trying to share honestly a deeply traumatic experience," Battin says. "It makes you reflect at a much deeper level about what's important in life."

Such reflections are Hopkins' true gift, his doctor says.

"I have never met anyone who can more clearly demonstrate and speak to what it's like to go through a spinal cord injury," Rosenbluth says. "He and Peggy provide an interesting, rich experience with new insights for everyone around them. It's as close as you can get to understanding it without being paralyzed."

On several occasions, Hopkins has found himself in conversations more vivid and real than he ever before experienced. The extended family has drawn close around him and one another during these nine months.

Sara Battin Pearson lives in Seattle with her husband, Greg, son, Max, 7, and daughter, Sydney, 5. Though they are sad about his limitations, visiting in his rehab room has become the new normal. When they enter the room, Hopkins raises his bushy eyebrows in a delighted welcome. He watches the children as they flit around the room, touching levers and drawing pictures for him.

"It's all about his eyes," Pearson says. "He has learned to relate on such a different mental level."

Pearson seeks for the few places on his body he still can feel, stroking his face or massaging his scalp. She visits as often as possible.

"This has been the defining moment in our family's life," Pearson says.

One night in the darkened room, Hopkins and his stepson, Michael Battin, opened up to each other in unexpected ways. Hopkins praised Michael's work with EMTs and paramedics as evidence of a nurturing spirit, a reflection of 42-year-old Battin's true self.

In response, Michael thanked Hopkins for guiding him into manhood by taking him on wilderness trips, camping, fishing and climbing. With unguarded emotion, they professed an abiding love for each other. The exchange meant the world to Hopkins.

"I see that moment as part of the Shakespearean romance part of this narrative," Hopkins says, "where suffering produces new sorts of insight, where families are reconstructed and reunited, where the roles of fathers and sons or fathers and daughters -- whether biological or new fathers, like me -- work on another plane."

If Hopkins had to choose between the ability to feed himself and roll over, and his newfound spiritual and psychological growth, "I'd give up physical autonomy," Hopkins says without hesitation. "I have learned the depth of compassion and friendship."

There is no telling how far Hopkins' physical therapy will take him. If he is able to breathe on his own, he can go home. Soon he will have enough finger dexterity to drive his wheelchair with a joystick. Of course, he hopes for much more.

Always a teacher, he sees himself back in the classroom, whether lecturing about literature or about his journey to a new life. He ponders writing a book as a guide for others facing such traumatic reversals. He wants to make his stepson proud.

At the end of the day, Hopkins drifts off to sleep, perchance to dream. In a few short hours, it all starts again.

Tuesday, September 15, 2009

Update on Breathing

Months ago, Brooke was told that when he got up to about six hours a day off the vent and could do that consistently for a number of days in a row, they’d downsize his trach from an 8 to a 6. He has worked, and worked, and worked at breathing off the vent, adding more minutes in small increments over impossibly long periods of time, but finally it has happened: the old 8 pulled out, the new 6 put in. This is a big and for the first time tangible step forward in vent-weaning, concrete evidence of real progress. Of course, there are more stages to go—the next one is downsizing from a 6 to a 4—and lots more effort before you can go 24/7 without the vent at all. Just the same this drop from an 8 to a 6 is a big deal, a long, long term intermediate goal finally met.

Of course, nobody told Brooke it would be harder with the 6. It’s like adding weights to your barbell, he says. So he’s back to building up hours off the vent: two hours 20 minutes this morning, an hour in the afternoon, another session starting right now, at 9:44 at night. I’m sitting at the foot of the bed, facing him, and I can see his abdomen moving with each breath. That’s new, and good. He’s listening to his favorite Music to Breathe By, slack key guitar. Earlier today he said he thought he could feel his diaphragm moving. In a sense it’s back to the drawing boards, building up the hours again; but in fact it’s a giant step ahead. Hooray.

Friday, September 11, 2009

Father and Son

This is Brooke speaking:

A number of months ago on this blog, in my account of the IMCU, I said that three important things happened there—the appearance of the lama, the interactions with the nursing staff, and certain conversations I had with my stepson Michael. I want to continue to explore the conversations with Michael, since they were transformative for both of us in this process. Peggy Fletcher Stack has alluded to those conversations in her second Tribune article, for which the site was just posted, but I’d like to give an account of them in more detail here, blending my voice with Peggy’s as we write.

These conversations with Michael took place late at night: the first in the IMCU, after I was no longer intubated and was able to talk, sometime last December, and the second about two or three weeks later, in Rehab. The theme of these conversations evolved over this period of time, and the second conversation built organically on what we discussed in the first conversation—and, indeed, it seemed as if there had been very little time between them, they were so closely connected.

We talked about Michael’s childhood, his relationship with his mother Peggy, my perceptions of his character as an adult, and we ranged over recollections of trips we had taken with Peggy and his sister Sara (of whom more in later blogs), when he was spending summers with us in Salt Lake City as a child.

The room was almost completely dark; I was lying in bed and he was standing above me, his arms folded and his stance balanced on his heels. That’s when I told him I had always thought he was a natural caregiver, and that all the EMT and paramedic work he had done over a period of almost 20 years was an expression of the deepest part of him. That’s when he opened up, and I opened up too. We started by talking about his complex relationship with his mother, and about differing perceptions of painful events in his childhood. That morphed into accounts of trips we’d taken when he was young—to Wheeler Peak, for instance, when Peggy and I had picked the kids up on the lawn outside Dennys’ after their class at the airport, then set off to drive across the west desert, when we camped beside a lake at 10,000 feet, just below an area of bristlecone pines, and when he got a fishhook stuck in his hand. Then there was the trip to Alaska, when we went as deck passengers on the inland ferry, up the coast from Seattle, getting on and off the ferry completely spontaneously until we finally found ourselves following a guide named Mark Jensen, carrying a rifle out onto a glacier, just in case we encountered grizzly bears. We went on a plane so tiny that the first trip involved just the pilot, a guide, and Michael; then the plane came back to pick up Peggy and me. We saw eagles on the way back, as we rafted back down a river, the name of which we’ve long since forgotten but whose appearance remains vivid in memory.

But now Michael is over 40 and travels on much bigger planes, conducting the medical software business he co-owns all around the world. He spends a lot of time on planes: from Seattle, where he lives, to Chicago, to London, to Kuala Lumpur, and once a month to see us in Salt Lake. (When I thank him for coming to see us, he always says, it’s the least I can do.) On some one of these planes, he had a realization—you could call it an epiphany—about himself and me.

He said he’d realized—while he has flying on a plane, at about 30,000 feet—that he needed to tell people what they meant to him before they died. (This had something to do with not being with his stepmom Sue when she died.) He didn’t exactly say, I want to make sure you know this before you die, but I think he thought it. He wanted me to know the important role that I had played in his growing up—in particular, in initiating him into some kind of manhood, by taking him on wilderness trips, by going to Alaska—he realized that he needed what I was able to give him in his life, the out-of-doors stuff, the energetic stuff, the adventuring--but he had not realized it until then.

I said, I’m very grateful for your saying this to me. I see that moment with him as part of the Shakespearean romance of this narrative, where suffering produces new sorts of insight, where families are reconstructed and reunited, where the roles of fathers and sons—whether biological fathers, or new fathers, like me--where the roles of fathers and sons or fathers and daughters are not necessarily biological but work on another plane.

But of course this is a hard realization too, to acknowledge that much of what I’d meant to him as a kid is stuff I can’t do with him anymore. I can’t take him hiking; I can’t do exotic traveling; and if we tried to go to Alaska it would be him pushing me around in a wheelchair on the deck of an ocean liner populated by largely by elderly people who view Alaska from their deck chairs. The possibility of all that wonderful outdoor adventuring is gone. And it meant so much to him, that little kid, growing up in the world.

Of course, we all recognize that onrushing age puts an end to these things anyway. He’s over 40 and consumed with running his company; he can’t go off to hike around glaciers in Alaska following guides with rifles, at least if his BlackBerry won’t work there. I’m 67 and although there would have been a great deal of physical adventure left in me for, I think, at least ten more years, still age would eventually take its toll. So what is lost was becoming lost anyway, if it’s just about the wild outdoor part.

But what remains seems now even deeper than what we had before, call it spiritual, call it emotional, whatever you want. It seems like a new kind of adventuring, if you can call it that, that we can both participate in. It’s simple, but new and profound: we can talk to each other now, really talk. This isn’t a story about a prodigal son coming back home or a difficult father mending his ways; it’s about what happens when you can’t do any of the ordinary forms of adventuring together and both realize that the only thing you can do is talk. It gets deeper, better. Strange, but I don’t know whether this could happen in any other way.

Friday, September 4, 2009

Salt Lake Tribune story, Part II

Here's the link to the second part of the story the Salt Lake Tribune is doing. I haven't read it yet; I'm waiting to read it with Brooke, tomorrow. What I know about this piece is that it's based on 75 pages of interviews, and that the person who posted the multimedia piece that goes with the print story cried.

The piece is scheduled to appear in the Trib on Sunday, Sept. 8.

Tolle, Lege

This is Peggy writing. Brooke and I often write things together for this blog, but it’s mostly my anguish that you’re seeing here. He hasn’t seen this entry yet, and maybe you won’t even want to tell him.

In the Confessions (an autobiography Brooke wrote part of his PhD dissertation on), Augustine gives an account of his labored conversion to faith: he is sitting in a garden and hears the voice of a child from beyond the wall, “Tolle, lege,” “take up and read,” and he opens the Bible he had laid aside to a random page. His eyes light on a passage from Romans that begins, “not in rioting and drunkenness, not in chambering and wantonness, not in strife and envying…” His full reform and conversion is accomplished at that moment.
The last couple of weeks have been pretty difficult for Brooke, though not for any well-defined reasons. There’ve been ups and downs with the vent weaning, although he’s up to sometimes as much as five off-the-vent hours a day, including three hours in a row; there’s been some discomfort; there hasn’t been much going on the functional-return department—a little more hand movement on the left, about the same on the right, not much new in the legs, yes some actual pain in the butt (a good sign), more chest rises with the breathing, not much at all in the biceps. But nothing spectacular, nothing. We were told by the doctor quite a long time ago that the period of greatest return is between the 5th and the 8th month, and we’re entering the 10th month now. Things are clearly slowing down, maybe stopping.
And there are little episodes of frustration, crossness; nothing major, but something that feels a little like depression. Not big serious cataclysmic depression, though of course depression in these circumstances wouldn’t be at all unexpected, but depression just the same. It’s been a hard time for both of us, not just Brooke, and of course one feeds the other. There are the very subtle, largely disguised messages from nurses, doctors, therapists: while the staff is unceasingly kind, the same interest in Brooke’s situation doesn’t always seem to be there, nor the same enthusiasm for his progress; it’s something more like marking time, time until some point that’s not very clearly defined. It isn’t just the summer doldrums; it’s something more—or rather, something less.
Some old friends of Brooke’s have been visiting from Michigan; it’s wonderful to have them here. But I’d left a copy of one of the texts on spinal cord injury someone had given me early on, the one by Sisto, Druin, and Sliwinski, lying on a table in the dining room, and they were leafing through it. I mentioned that the person who’d given it to me—a physician with experience with SCI—had said that the chapter on psychology adjustment was the best in the book, and I realized I hadn’t ever gotten around to reading it.
Late in the evening, I picked it up. I opened the psychological-adjustment chapter to a random page. My eyes lit on the following table:

Table 5-1 Interpretation of Stage of Grief Theory for Patients with Spinal Cord Injury

Stage Interpretation for SCI; Function

Hope of recovery and return to premorbid functioning; Function: Maintain premorbid identity

Increased awareness; external expression of emotion; Function: Control situation or destiny

Hope of improvement; Function: Maintain motivation for treatment

Uncertainty of future; defeat; Function: Grieving of losses; preparing for future

Willingness to do things differently; Function: Regain quality of life

I’ve done a lot of work on end-of-life issues over the years, so a five-stage account of grief is not at all unfamiliar. It’s drawn originally from Elizabeth Kübler-Ross, and is used frequently with respect to terminal illness: these are supposed to be the stages a patient goes through in moving toward death. No matter that Kübler-Ross took the final stage to be decathexis, a withdrawing from the world in general, and not the sentimental “acceptance” that her theory has been widely sanitized to involve; but suddenly here it is, in my face.
Denial/Anger/Bargaining/Depression/Acceptance, those are the stages that grief over spinal cord injury also passes through. Could it be that Brooke, and I in tandem with him, have already traversed Denial—the hope-of-recovery stage—and it’s now turning to Anger? Or that we’ve been through Denial, some subtle form of Anger, through Bargaining, and are now getting to Depression? The text continues,

“A prolonged period of imposed helplessness with a gradual resumption of limited independent activities puts patients at risk for development of psychological symptoms in general and depression in particular. As a patient becomes increasingly aware of his functional limitations and begins to grieve the associated losses, depression may ensue. Reported feelings of guilt for the effects injuries have on loved ones and the fear of becoming a burden to family members contribute to the development of depression…”

That morning, Brooke had been taken to the U for a checkup with the surgeon who had operated on his neck right after the accident. It was a horrendous trip, he said; he’d been transported strapped flat on a gurney in the back of the van, so that every ripple in the road or turn around a corner produced enormous spasms. He arrived so traumatized that he was dissociating—he asked the x-ray tech and the medic if they were really real (though when I asked him if I seemed real to him, he said, well, a little more so)—but by some great courtesy the head of Orthopedics had come to greet him, and seeing his distress managed to order in the appropriate spasm medication on the spot. But that wasn’t the only hard part of this visit. It was seeing the surgeon himself, as gentle and kind but also honest a man as you can imagine, have nothing to say. This was the surgeon who’d exclaimed an utterly genuine “Awesome!” when he’d seen Brooke move his toes right after the accident, and who’d said encouragingly at the next checkup that with this type of injury, arms come back after legs. But now there wasn’t much to say—the bone fusion had been accomplished and you could see the pins perfectly in place on the x-ray, but there wasn’t anything else to comment on, nothing more he could promise or do. Finally, he did the one thing a doctor can do when there’s nothing else he can change: he said to Brooke, “I love you, man.”

But wait a minute. That little 5-step paradigm of Denial/Anger/Bargaining/Depression/Acceptance has become orthodoxy in many areas of mental health, but that doesn’t mean it’s true. Or true in general. Or true in this case. After all, it assumes that what’s feared will actually happen—death, in the terminal-illness case; extensive, permanent paralysis in this one. Do we just “accept” that conclusion without any further efforts to try to coax some further return of sensation and movement out of a damaged body? We remember Dale Hull’s ringing insistance that return goes on far past a year, as the old assumption ran. As I see it, giving in to these kind, well-meant messages that, well, nothing much more is coming is utterly defeatist; while you prepare to be content with whatever happens, you never never never never never give up trying to enhance whatever prospects there are for future function. Not now, not at the one-year anniversary, not ever. This is where a kind of resolute, dug-in optimism and an acceptant realism collide. All my life, I’ve muttered the maxim “Never take no for an answer” under my breath in situations of all sorts, and I find I’m doing it now, in spite of the ubiquitous messages that not much more return will come. I feel stubborn. Not giving up is not I think just Denial but a kind of personal policy decision, even when the evidence looks the other way: Keep on pushing, no matter what, even if things seem to be stopping. Otherwise, you guarantee that things will stop.

That’s my anguish. What follows was written later that same evening:
It’s the night before September 3—that will be six months to the day that Brooke’s been at South Davis. There are various ways to tell how much time has passed—not only by the rise and now decline of hot summer weather, or by how many full moons I’ve seen driving home late at night, or by the restlessness of the insurance company, sympathetic but concerned about whether Brooke is making sufficient “progress” that warrants keeping him in the hospital—after all, he’s been an inpatient for nine months now, fully covered, but he’s not off the vent and he hasn’t regained any real functionality except driving the power wheelchair by moving the joystick with his left hand. It would be a lot cheaper for them and all participants in this health-care plan (which include many readers of this blog) if Brooke were home, where all the care is assumed to be done by family members and almost nothing is covered.
After all, progress in vent-weaning has been, like everything else, glacially slow. First it was a couple of minutes off the vent, then 20 minutes, then seemingly months later it was an hour, and over the past months it’s been creeping upward, through many dips and setbacks. Brooke’s been told by the respiratory therapists that when he’s able to do six hours off the vent—reliably, and over a number of days—that they’ll consider downsizing the trach to the next smaller size, from an 8 to a 6, the next big step on the way to vent freedom. But for almost all his time here at South Davis, this goal—six vent-free hours—has seemed impossibly far away.
Tonight, he made six hours for the first time. Two and a half in the morning; two in the afternoon; and hour and a half in the evening, after a very nice meal with a great friend who’d just flown in from Maine, eating Chicken Marengo I think it’s called that had been in the freezer since it was left on the doorstep some weeks ago by an old college classmate. After dinner Brooke settled back into the bed, listening to a recording of slack key guitar that seems to have just the right beat for breathing, fixing his eyes on the photograph of a small but perfect alabaster Buddha he’d taken in a remote temple somewhere in Myanmar when we were there last year.
Six hours! After he made it to the six-hour mark, at eleven o’clock at night, he said that during that last hour and a half off the vent he’d been thinking in a fully mature way. He spoke of a kind of serenity, a serenity he said about how (and now I’m quoting) a very active person, who had always sought to be independent, transitions to depending on support in almost every way. He said he knows he may not regain much more feeling or more movement, and that (now I’m not quoting) there may not be much that develops beyond the only real function he now has, moving the joystick on the wheelchair. He intimated that he knows this and could recognize it while he was trach-masking; but he also said it was a completely serene moment, perhaps (and now I’m quoting again) the most serene moment of his life.

Perhaps we’re not on quite the same page. But then, perhaps that’s not such a bad thing.