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.”

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.

Progress Report

 

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

 

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

 

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

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

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

 

 

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

 

 

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

 

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

 

 

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

 

           

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

 

 

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

 

 

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

 

 

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

 

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

 

 

 

 

The Shadow Side of Dependency

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

 

                                                *           *            *

 

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

 

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

 

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

 

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

 

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

 

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

 

 

 

 

 

 

 

Recovery in a House of Love

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

 

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

 

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

 

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

 

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

 

 

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

 

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

 

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

 

 

 

 

 

 

Homeward Bound: A Moment of Radiance

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

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

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

 

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

 

                                                            *   *   *

 

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

            I’m being discharged to home in the morning.

The Paralysis of Being in an Institution

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

           

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

 

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

           

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

 

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

           

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

 

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