Sunday, June 19, 2011

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

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

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

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

The Long Road: Brooke Hopkins’s Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, June 4, 2011

How Our Garden Grows

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

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

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

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

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

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

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

“Get Brooke Into His Garden” Design Contest

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

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

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

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

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