Myth, Comforters, and the Hero

 

            Yesterday morning Brooke woke up with the uncanny feeling that he was living some kind of myth, written a long time ago and repeated endlessly for centuries.  He had had these feelings months ago during this particular episode in his life; they returned yesterday with renewed force, with himself cast as the hero undergoing an ordeal.  This isn’t meant to sound conceited or to puff himself up as a hero; rather, it’s to explore the parallels between the archetypal heroic myths and what one poor guy who’s had a really bad accident goes through.

 

For one thing, heroic ordeals can be long.  The hero sets out on what will become his adventure; it is often years in the unfolding.  For Gawain, it was a year.  For Odysseus, it’s twenty years from the time he leaves his comfortable home in Ithaca until he’s back there again: ten years in the war against the Trojans, and another ten years sailing home.  Or Job—Job isn’t always regarded as a classic “hero,” but in many ways he fits that mold: he suffers, he meets obstacles (the comforters), he suffers against overwhelming odds (a Satan empowered to do anything to him short of ending his life), but in the end is rewarded with something far greater than he lost—he has a vision of cosmic and divine reality in which his sufferings are reduced to total insignificance, as Yahweh appears in the whirlwind and he at last understands.  Was Job’s ordeal long?  We don’t have any way to answer this question, but it was as tortured as can be imagined.    Brooke’s own ordeal isn’t exactly like Gawain’s or  Odysseus’s or Job’s, needless to say, but still has something in common with each of them.  For one thing, it is already longer than Gawain’s—and will last of course (though in diminished severity) the rest of his life.  

 

The particular myth that Brooke found himself imaginatively reenacting yesterday morning, and indeed most of the day yesterday during his trach masks and again today, involves an ordeal that is like theirs in that it is long, often tortured, and in many ways against great odds.  He wasn’t imagining Job exactly, though in many ways that’s the heroic story that his experience most resembles.  Job’s sufferings were intensely physical, as are Brooke’s, but also psychological as well, like Brooke’s.  But there are great differences:  one difference, says Brooke, is that I don’t blame God or some divine entity,  nor do I think there was any divine role or purpose in this accident.  Another difference is that Job’s “comforters” actually turned out to be his torturers; the poem condemns them for their phony consolations and condemnations of Job as someone who has brought his suffering on himself.   My comforters, on the other hand, Brooke says, really are comforters.  Unlike Job, I’m surrounded by people come to my aid, who help me, who want the best for me, who try to understand at the deepest level what has been happening to me;  Job’s comforters were accusers.  My comforters are essential in helping me survive the ordeal; without you, I wouldn’t be able to undergo this journey at all; I think I might not make it.

These figures in my imaginative myth—you--are actual real human beings of flesh and blood, female and male.  But looked at from a visionary perspective, you take on allegorical significance like that of mythical characters, as figures of succor, aid, support.  Many of you are medical practitioners: nurses, aides, respiratory therapists, doctors, the people I see every day; many others of you are or have become close friends over the course of this particular ordeal;  still others of you are family.  You have brought this “hero” tremendous love and support, without which he probably would not be anywhere near as far along in his ordeal, even though the way is still very, very long and progress slowed by various bumps in the road like the infection I’ve just had.   Unlike the archetypal myths, however, there don’t seem to be any demons or ogres or sorcerers or devils or other enemies among you, the real human beings populating this ordeal.  You all help me, though in very different ways; it’s easy for some of you, very hard for others to see what’s happened to me.   That’s part of the imaginative mythmaking: to see the help you give me in a larger, poetic way, part of an ancient story that has been played out countless times over the millennia of human experience.  You didn’t appear out of nowhere, as sometimes happens in heroic narratives, and you aren’t gnomes, elves, fairies, or angels.  You are all real, but from an imaginative perspective you’ve taken on a kind of mythic significance, so important you are to me.  Every day, “real” events occur to you too in your relationships with this particular hero, but it still seems as if some larger pattern is being played out, one of those patterns we name myth.    

Of course this all sounds a bit over the top, even self-aggrandizing, but it’s not meant to.  After all, your lives are not dissimilar if you look at them from this perspective too—we all live lives that can viewed as heroic odysseys against sometimes  modest, sometimes enormous odds, involving little nuisances or formidable evils—those ogres, demons, sorcerers plotting for your downfall. 

Your ogres are all different, as different as you are.  And my ogres shift from time to time; sometimes they’re things like Pneumonia and Infection; sometimes they’re things like  Discouragement and Despair.  And sometimes of course they all gang up on me at once.  Furthermore, and here there is something in common with Odysseus, there’s the sense that this ordeal has been going on a long, long time.  It helps to view it in this mythological way; it’s a way of making meaning out of something.   Poets like Blake like remind us of this; it’s just that we forget how life can be viewed as deeply allegorical, even when it seems like just ordinary hardship and pain.

 

            Maybe it’s appropriate that we began writing this on Christmas Eve, only a week before New Year’s.  These days are among the ritual moments in our year, moments that would put us for the time being above mundane reality, though our everyday year is largely stripped of such moments.  But ritual moments are a good occasion for imaginative mythmaking, and the myths we are making tonight are in a way our Christmas present to you, to recognize once again the enormous role you’ve been playing in helping Brooke in his very real and very long ordeal. But it’s also a wish for the New Year, that you’ll still be here and still helping this battered hero along.

 

 

 

 

 

 

 

 

Home Visit

             A couple of days ago, Thursday, Brooke made a much-delayed visit to our house on M Street—at long last.  The purpose of the visit is to inspect once again what needs to be adapted for him when he returns, sometime late this winter or early spring we hope.  (All dates are pushed ahead in this particular experience.)  One of the things that he noticed driving in in the South Davis van was that the deep sadness that he had felt on previous outings, to the hospital, to Snowbird, etc., was oddly missing.  You would think that driving up through the Avenues to our home would be an extremely painful experience as he passed by familiar houses, streets, trees, even Avenues pedestrians, but strangely this was not the case.  What emotion Brooke felt was more like acceptance of his new situation, even though he was practically flat on his back in the wheelchair in the South Davis van, having been ordered to stay off the lesion on his butt, even though he could see only a portion of the houses he passed.   Only a couple of months ago he would have cried at this experience, but now at this time, he felt a kind of serenity.  The serenity also passed over into his arrival at our house.   It’s true that he felt a certain loss in not being able to rake the leaves on the front stretch of lawn under the three sycamores that line M Street, something he actually loved doing, but for the most part the house seemed welcomingly familiar. 

 

            Brooke has actually visited the house one time before, when an appointment he’d had at the University Hospital had been canceled without informing South Davis; we’d suggested stopping at home for half an hour on the way back.  That time, he was strapped to a gurney, pulled by two of the South Davis transportation staff; but perhaps it was that visit that absorbed the emotional impact.  At that time, the grapes were still small on the grapevine and everything around the house was a brilliant green; we sat on the deck outdoors and ate an impromptu lunch with a neighbor and the transportation guys.  What he felt then had more to do with the unexpected nature of the visit; this time, the visit was highly planned, and had a specific purpose as well.

 

            The purpose of the home visit this time was to find out what it would be like for Brooke to negotiate his way around the house as it is currently configured, with its present accoutrements—a thick rug, lots of furniture, piles of papers on the floor, a beautiful new front door that however is not easily negotiable by the wheelchair because of the narrow approach angle past the low rock wall that stretches across the front porch.  But during this entire visit Brooke actually felt happy, not just at seeing a space filled with objects that he loves but also a number of people he also loves, including Peggy, Michael, Dave, and Peter, those from South Davis—Dominic, Emily, Bryan, Rob, and also Peggy and Leah from the Tribune.   What a party!  There was almost a festive atmosphere to the visit, as Brooke rose to the challenge of negotiating the front door with aplomb, and once in the house started to explore it with his wheelchair (which is almost as big as a Harley), the way a kid who’s been away for a couple of months’ vacation zooms around his own house from one room to another with a  kind of glee. 

 

            Brooke’s explorations involved going into spaces small enough that it was difficult to back out of without crashing into one piece of furniture or another, challenging himself to find his way in and out of the kitchen in narrow spaces—going forward, backing up, going forward at a different angle.  This may have left dents in various pieces of furniture in the house but the experience was exhilarating.  Perhaps the most exhilarating, not to say frightening, experience of exploration involved going out through the new front door.  He went up over the lintel, not yet fully finished –it was quite daring that he should have done that--but terrifying.    He came down off the lintel, about an inch above the level of the concrete porch, with the low rock wall that goes across the front porch in front of him.  Perhaps it’s a bit of an exaggeration, but it seemed as if the drop might have sent him flying over the wall, and the look on his face was one of terrified surprise, as he really didn’t think the huge wheelchair could stop before it crashed into the rock wall, something particularly dangerous because the chair has no functioning seatbelt.  But it did stop. Everybody laughed, but it was clearly a laugh of relief that nothing worse had happened. 

 

What is responsible for the change in Brooke’s emotional response to this particularly journey?  What’s the reason for his comparative serenity as he drove through familiar streets that he’d driven down nearly every day of his life in Salt Lake City over the past thirty-four years when he was still a “normal”?—time certainly has something to do with it.  It’s been over thirteen months since his accident and he is beginning somehow to learn to live in his new body, with all of its limitations.  That’s why when you see people in wheelchairs, he says, they sometimes appear to be so at home in them, so not-angry,  Some of them have lived in wheelchairs for decades; this is their way of being in the world, much as your way of being in the world is to walk on two legs and to be able to climb stairs.  What’s remarkable is how slow the transition from a “normal” way of being in the world to a “non-normal” one--call it disabled—is extremely gradual and probably never ends, but surprisingly Brooke’s experience during the home visit demonstrates that it does take place.  Driving his wheelchair around the house did not feel to him like a “weird” experience, he says; it certainly didn’t feel “normal” in a place where he has lived for over thirty years, but it was not like riding a horse around the house.  But driving the wheelchair around the house has, like being driven around the Avenues, convinced him that he could live in those spaces again and be driven down those streets and not feel particularly consumed by mourning, as he would have thought he would have been four or five months before this.

 

Note, Friday.  The timing of the visit home was fortuitous, because tonight his doctor has told him that he will have to spend the next week confined to his bed again to avoid placing any pressure on the wound on his buttock.  It’s just a superficial skin wound, not a pressure sore, but right under the sitting-bone and so in a very bad place.   In fact, this home visit seemed like a bit of  playing hookey on Brooke’s part, since he might not have been given permission to go. But what’s done is done now and the wound looks no worse. 

 

Second note, Saturday.   He’s still in bed, and although the wound is looking better he’s got a UTI, probably associated with the Foley catheter he’s been wearing to keep the wound from being exposed to leaking urine that happens with straight-cathing. Funny how fixing one problem leads to others; but at the moment—after several very hard days-- he’s smiling, even laughing, as we discuss whether it’s appropriate to put this level of anatomical detail on the blog.

            

Writing the Blog

People have occasionally asked us how this blog is written—“who” actually “writes” it, when, and how?  We know that authorship has been a central topic in past years in literary criticism, but in literary criticism the analysis of authorship typically involved sleuthing out how an author who is no longer available wrote what he or she did.  Foucault’s Death of an Author, Barthes’ What is an Author, and other similar works were part of this inquiry, sometimes skeptical about whether one can speak of “the author” at all.  But there is an Author here, two of us.  We want to make it easier—we’ll just tell you how we’re doing this.

 

            Early in the blog it was our daughter Sara who did most of the writing; she was trying to keep the large array of family, friends, and others up to date on Brooke’s medical situation right after the accident.  It was a convenience in communication, so to speak, a way of providing news without having to repeat it too often.  But when she went back to her home in Seattle after a couple of weeks, she was not able to be on the front lines anymore and writing turned to others, occasionally other family or friends, but mostly us, Brooke and Peggy.

 

            Of course there are segments of the blog that were written by just one or the other of us.  The initial narrative by Brooke was written after he learned Dragon Naturally Speaking, the voice-recognition software for computers, at the university rehab.  Other parts are taken in dictation from him, in his own voice.  There are sequences written by Peggy in her own voice, usually shown to Brooke before they’re posted but occasionally written in the middle of the night, sometimes in anguish, and posted right away.   But for the most part, especially in the recent months, we’ve been writing this blog together.

 

            But what does that mean?  What does together mean?  Though we’ve each written plenty of academic stuff and have also each written nonacademic stuff-- Brooke has written and published autobiography, Peggy fiction—with the exception of one small academic article on psychiatry and religion we’d never written anything together.  But we still remember how difficult that was and how we discovered major differences in the way we work:  Brooke would start by reading all the literature, then writing; Peggy would start by thinking through the conceptual issues first and writing right away. We wrote draft after draft, tussling back and forth.  In the end it made nice work together, but it was rough now and then.

 

            That was then; this is now, and the circumstances are vastly changed.  What about writing together now?  This isn’t an academic article anymore, this is about real life. 

 

             Take a particularly blog entry, like the one you’re reading now.  Sometimes it begins with an idea of Brooke’s, sometimes with one of Peggy’s, but it is usually Brooke who composes the first few lines in his head.  Then Peggy, as she’s taking down on the laptop what Brooke is saying, edits, modifies, fills in.  Indeed, this becomes a more and more elaborate process, as what Brooke dictates suggests other things, and then she wings off on tangents of her own—sometimes as Brooke is still dictating, talking into what has become a temporary void. Sometimes it’s Peggy’s ideas that launch a topic.  In any case, there’s a later stage where we read what we’ve written together over together, back and forth, over and over, until it feels right between us.

 

            Right now, for instance, we’d just been talking about how we didn’t have very much to say to the blog.  We’re in Brooke’s room, in the evening, and the plastic containers that held the food Peggy brought for dinner are sitting around empty.  Brooke’s in the bed; Peggy’s sitting on a high chair next to the bed, with her feet up on it. There’s a plate of fruit—canned fruit, from the hospital—on the bed between us.  The nurse, Craig, is changing Brooke’s PICC line—an IV line that goes from the insertion site just above the elbow up through the vena cava that is the main vein to the heart, used for the big antibiotics Brooke had been taking and even though the surgical wound is healing very nicely and the antibiotics are discontinued, is kept in readiness in case something more should be needed.  Craig is working on the line, and now we’re taking a bit of dictation from him about where it goes, what it does.  “Sounds scary,” says Brooke of the PICC line, but we both recognize that it has played a major role in controlling the recent infection.

            Usually, we write at night, almost never in the daytime.  This is our creative period, after dinner, before the lengthy preparations for bed.  We don’t always have time, and we don’t always have something to say, but sometimes things just emerge, that we’ve been thinking about or worrying about or even enjoying.

            Part of the interest, we assume, is that readers might be curious about who wrote this.  Could literary analysts can piece out who wrote which words?   Peggy has worked with various other people on jointly authored works—for instance, one on drug issues and one on infectious disease--but this is different.  There, often, one person in a working group would take responsibility for drafting a section or a chapter, usually the person with the most expertise in a certain area, and then all the authors would review it, revise it, work through it multiple times.  Those works were certainly joint.  But this is more joint, what we are writing together. 

 

            The ballet of doing this is a matter of balance, not always achieved. Often, Brooke starts an idea or a sentence, provides a kind of skeleton, and Peggy elaborates with lots of minute detail.   This means rather long pauses sometimes, as Peggy takes off with an idea that Brooke initiated. Of course, collaboration isn’t entirely new to us. When Brooke wrote an article, he’d give draft after draft after draft to Peggy, who’d urge various revisions, sometimes minor, sometimes immense.  Even from the very beginning of our relationship, when Peggy was working on controversial topics in bioethics, especially end-of-life ones, Brooke would put up a spirited argument against her view—and, in the process, oblige her to rethink, rethink, rethink what she’d thought she knew.    But this writing is somehow different.

 

 

We’re in Brooke’s room, with its marvelous brownish paint, with a dresser and console that hides the flat-screen TV, with two paintings of a river somewhere in an autumn field—it’s one of those hospital rooms that is meant to look like a room in a swish hotel.  Usually Peggy sits in the bed next to Brooke, sometimes leaning back against the footboard, facing Brooke; sometimes next to him both facing in the same direction.  Often we’re working against the clock, with a deadline like a newspaper, but the deadline is usually the arrival of the shower aides, or the respiratory therapist for CoughAssist, or the nurse with the night medications and the aide to place the boots and splints and brush the teeth.   It’s important to us to get it done.   Writing together has become the thing that we do together, since we’re not hiking or skiing or traveling or dancing or doing any of the other things that couples do.

 

But the pleasure of composing together and the intimacy of it is real—partly because we have to recognize not only our differences in style and technique but in focus.   It’s like having an intimate conversation with one another, as opposed to the often mundane details of our practical lives, like conversations about schedules, visitors, medical procedures and so on.   It’s male and female combined, perhaps a substitute for more usual physical intimacy, but there is an intermingling here.  There’s something androgynous about it but also something somehow erotic, in this interweaving.

 

            We’ve sometimes worried about what will happen when we’re in creative doldrums, searching around for themes to write about but without any depth—what might happen in the future, if this becomes our main form of interaction?  What if one of us takes over the text?  Could it be Peggy, since she’s the one who has the capacity to type on the computer; or will it be Brooke, when Dragon Naturally Speaking is up again and he can dictate whatever he wants without Peggy’s editorializing.   (We’re getting very meta here, remarks Brooke.)  Will we be able to continue this remarkable dance, even if we’re each occasionally a trifle impatient with the other—Brooke, if Peggy stops listening to his dictation because she’s off ginning up details on her own, or Peggy if Brooke isn’t hearing her ideas.   But in general it’s a deeply intimate dance, and almost no single sentence is by just one of us, almost always a mix from the two of us.  Like any dance, it’s a prelude to a future, sometimes of even greater intimacy.

 

            And while we've been talking about the Author we haven’t even mentioned the Reader—that is, you.  That’s the other important part of this blog.  Stay tuned.

 

           

           

            

Working Up to the Pacer

            Today, after several delays, we went to the University Hospital—where Brooke’s long year of hospitalization began—for the initial workup leading up to the implantation of a diaphragmatic pacer.  This device involves two pairs of little electrodes stitched to the underside of the diaphragm, powered by an external battery pack; it’s programmed to make the diaphragm contract and thus strengthen it so that Brooke can breathe more reliably on his own, at least during the day and maybe even 24/7.  You’ve heard about this device many months ago; now there’s about to be action. 

 

            The day began with the transport from South Davis: it was 14 degrees outside, so Brooke was hulled in mittens, a hat, a neckscarf wrapped rakishly around his throat so that only the tip of the trach was visible, and three layers of the warmed blankets that the hospital makes available.  Inside the van, the 2009 versions of classic Christmas carols blared from the radio, sung by a modern-day Bing Crosby, but the trip was actually a fairly easy one. Once at Rehab, Brooke said he felt some nostalgia—he’d spent almost three months as a patient in that unit, and many of the people he’d been close to there were still on the floor, still working hard, but they all remembered him.

             In the consultation room, we met the principals who will be involved in the pacer:  the surgeon, who will be trained by the specialist from the Cleveland Clinic;  the pulmonologist, whom we knew from earlier times and who’d introduced CoughAssist into Rehab; our wonderful spinal-cord doctor.  This will be the first time this pacer is used in Utah, and Brooke will be one of the first four patients to have it.  Needless to say, among the people involved in the pacer, indispensably, was the research associate, bringing the long, complex informed consent document. 

            Brooke wanted all of the informed consent form read to him, especially the section on risks.  Implanting the device could puncture the diaphragm; it could lead to bleeding; the external leads could break; etc. etc.   But the risk is lower for Brooke in several ways: because he has worked so hard on breathing over the past three-quarters of a year and can now breathe off the vent for as long as seven hours in a day, he’s a very good candidate for this procedure.  If something goes wrong, he can still breathe; if it goes right, which everyone expects, it will take advantage of the strength he has already developed in his diaphragm and, it is believed, make it possible to get off the vent much, much sooner.  The best guess at the moment is that the surgery will happen sometime in mid-January.

            Of course, there are still many steps after the thing is implanted.  There are conditioning sessions, when he’s off the vent and lets the pacer do the work.  He’ll need to use a Passey-Muir valve while eating, drinking, and speaking, the three most important activities of all.  And there are still stages of trach-size reduction and secretion control and so on—just the same, this will be we hope a big step forward.

            “I’m excited,” Brooke said, at the end of the morning.  In fact, practically everybody had said it in one way or another during these meetings.

 

 

The Dark Side of the Moon (Again)

            Inevitably (but you’ve heard all this before, and you’ll undoubtedly hear it again in these pages), the payback comes.   Seven hours off the vent yesterday, a new high, followed by four this morning, brings exhaustion.   CO2 levels rise, respiratory rate increases, SATs go down, and the feeling of exhaustion overwhelms, bringing depression and leading ultimately to the wish that this were all over.   That’s the way it’s been this afternoon, just a day after Thanksgiving, when we had such a good time eating the traditional turkey feast with close friends. 

Why doesn’t one learn from past experience?  This pattern has happened over and over again:  the euphoria blinds one to what is coming.  The euphoria involved in breathing is all-consuming; when it’s happening, there’s nothing quite like it--even though it not only doesn’t last, but gives way to something as dark as the euphoria is luminous.  You can imagine just how dark that is.  That’s where things have been this afternoon—even though we can remember the triumph of yesterday, seven hours off the vent.

 But we do learn from past experience, once the worst of it is over.  This pattern is actually recommended by some experts in trach-weaning: push, push, push, then collapse. Then do it over again.  Despite the overwhelming interval of despair, Brooke is really on a roll. 

Thanksgiving, Friendship, Trout

We ate turkey for Thanksgiving dinner at South Davis, the traditional meal, but trout came to be an important part of it. Not part of the dinner itself—no, this was a classic Thanksgiving feast, cooked by two couples of very close friends, with a third dropping in to say hello. You know how a dinner like this goes: turkey, stuffing, potatoes, gravy, yams, sweet potatoes with oranges and figs, turnips, spinach, and an astonishing cranberry sauce. A nice light red wine. And two pies, apple and pumpkin nut, made by still other friends. We talked about friendship, or, rather, we lived friendship, understanding what it means in these extraordinary circumstances. We wished others could have been there too, family, other friends, people with whom closeness is growing. We’re well aware of the changes in friendship patterns that occur with any major life event, especially the traumatic ones, whether it’s divorce or losing a job or breaking your neck—some old friends shy away, too embarrassed about what to say or too busy with the trauma in their own lives; others come into much clearer focus. But somehow this injury has been a friendship magnifier—Brooke and I both say, we had no idea..

In any case, this was a wonderful Thanksgiving. There was a lot of talking, but also a brief reading. Just the day before, Liz had found a slip of paper with a handwritten poem she composed last spring—something that captures the hard thing all Brooke’s friends and mine are having to do, come to terms with increasingly apparent fact that Brooke’s paralysis is looking more permanent, part of the long-term future. Here’s Liz’s poem—(could it be called “Brooke Trout”?):

At first, right after the accident, I was wishing on stars, even on starless nights, wishes that would have had you leaping tall buildings in a single bound by this time. Now I dream of fish. They rise up out of sleep like trout Peggy and I once watched in a swift stream on Boulder Mountain. Fish that hold themselves steady in the current with almost imperceptible movements of fins and tail.

Lucky fish. Schools of perfect bodies with one single mind. A simple mind. Poor fish.

The almost imperceptible flickers of your fingers and toes as your mind moves back into your body. Poor, imperfect body. But what a mind! The entire Pacific Ocean of a mind.

Liz Kuhlman

Spring 2009

P. S. Just the same, Brooke’s poor imperfect body is still making progress. He did a total of seven hours off the vent today, yet another new record, and said it wasn’t hard at all.

The Brighter Side of a Difficult Situation, Cont'd.

Continuing from earlier efforts, we’re looking at the brighter side of a difficult situation--but yes, there are brighter sides. Brooke achieved several milestones over the past twenty-four hours. For one thing, yesterday afternoon, in his second trach mask trial of the day, he reached a tidal volume of 682 cc.—way, way beyond the 100’s and 200’s he was drawing when he was first here, and even beyond the 300’s and 400’s of recent days. His tidal volumes have normed somewhere between the higher 400’s and 500’s. His 682 seems to have impressed even the most hardboiled of respiratory therapists, especially the ones who once thought he was never going anywhere.

Then today, Brooke spent six and a quarter hours altogether off the vent. The afternoon was a particularly sublime experience. After “releasing impure thoughts from his mind” by meditating on what he calls the “Great Sea of Tranquility,” beneath which the kelp of his earlier imagery waves gently in the currents, with a single fish gliding through it, sometimes he sees the Buddha in his sitting position, floating above the Sea of Tranquility, meditating upon it. This image, when it comes into his consciousness, he says, immediately purges impure thoughts.

Impure thoughts? Anger, resentment, disillusionment. You don’t have to use weird Buddhist language to recognize these things; they’re always around But during this afternoon’s trach mask, Brooke says he could visualize and actually feel his own chest wall moving back and forth, in and out, in and out, in and out, as he inhaled air through his nose and expelled it through his mouth. The visualization helps to concentrate the mind, he says, when it wanders away, as in any form of meditation, in random thoughts about the past or the future. He says he can pull his mind back into the immediate experience of feeling his chest wall move back and forth, and sometimes he can visualize his diaphragm ballooning out and then contracting, over and over again. This afternoon he was on the trach mask for two and a quarter hours—after four this morning—and didn’t want to stop at all. He says this made him think that in some odd way this whole nine months has been leading up to these moments, as day after day, day after day, twice a day on a regular basis, he has tried to push himself to gain strength. The pattern is so predictable: there are periods in which his strength dips, almost inevitably, followed by rest periods in which his mind and body gain strength and then push toward new heights of breathing ability. This is what he asked: How many people have been given this crazy opportunity to recover breathing, over such a long period?

When he is trach-masking, Brooke’s room takes on the air of a monastic cell. He is confined here, in effect, since he still has to be tethered to the warmed and humidified air supply, even if he is breathing this air on his own. He only rarely gets glimpses of the outside world, especially since he has to remain in bed, not in the wheelchair, as the surgical wound from his abscess heals. Not until 8:30 in the morning, when his morning trach mask begins, does the sun even penetrate his room, and it remains at a low, dim angle all day.

Brooke says he always wanted to go on a year-long Buddhist retreat. Now here I am doing it, he says, and somehow my earlier meditative practices are bearing fruit. They were often painful and frustrating, especially during the early parts of a ten-day sit, but they were of tremendous importance to me as well. Of course they were different from my present breathing trials: for one thing, during those ten-day sits I didn’t have Bach cantatas playing in the background, as they are now, or Julian Bream’s guitar—you wouldn’t find these in a Buddhist monastery. But so what; Bach penetrates the mind on a deep level, making profound, almost organic meditation possible. My room feels like a monastic cell—larger, perhaps, and more cluttered, and if my eyes were open I would see boxes and paintings and a looming TV set that is almost never on, but it bears sticky notes with love-hearts and cupid’s-arrows and stars. You wouldn’t find these in a monastic cell either, but in spite of the fact that this same room is open to a regular procession of nurses and aides and respiratory therapists, as well as visitors, it can still feel like a monastic cell when I am in my deepest mode of breathing. I like it. I love it.

All this is to look on the bright side of a difficult experience. (We certainly know there’s a darker side, of course, much darker.) Not always, but sometimes, these breathing exercises give me enormous joy as they are occurring, and I now actually look forward to these sessions, instead of anticipating them with the stark terror they once held. I look forward to them in the same sort of way I looked forward to the last several days of meditation during my Vipassana courses—that meant just sitting, and running the mind up and down the body, feeling the sensations. Here, in my trach-masking, the meditation is partly Zen-like in that it especially focuses on breathing, not just physical sensations. How many breaths of my own can I have taken over the past nine months here at South Davis?—who knows, hundreds of thousands, I suppose--and now, all that breathing, all that anxiety, seems to be passing away as the trach trials become something I actually look forward to, especially when the therapists are empathic and respond to what is going on with enthusiasm, and especially with Peggy in the room, grading her papers and sometimes dozing off in the big green reclining chair that is part of the furniture of this room. You wouldn’t find a chair like that in a monastic cell either, or your wife, but I’m glad they’re here.

What can one say if all this stuff about organic meditation and monastic cells sounds curious, or bizarrely religious, or just weird and strange? That’s fine. Life is sometimes extremely curious, and offers gifts when you least expect them and under circumstances that from the outside would appear desperate and impossible.

There are hundreds of poems and prose works built around the topos of the prison—think of Coleridge’s “This Lime Tree Bower My Prison” or Winnicott’s paper on imprisonment. The paradox of the prison is that it 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.

Remodeling and Renewal

             A few nights ago, Peggy went to a gathering hosted by our friends Dave and Liz to celebrate Brooke’s progress so far, precisely a year after the accident. As it happens, Dave and Liz had just remodeled their kitchen, with quite spectacular results, and Peggy was seeing it for the first time.   She was astonished by how much a simple renovation can do for a living space like a kitchen—or rather, something that that was already a living space but has become so much more so.  When she got home, she took a fresh look at our own kitchen, and realized that it would take some doing to make our fairly compact kitchen available to Brooke in his wheelchair, but that by making use of a dining area that had come to serve largely as a repository for piles of magainzes, bills waiting to be paid, and infestations of sticky notes, the area could be opened up.    There is after all a new front door that enables Brooke to get into the house—that’s already one change.  And there are new French doors leading out onto the deck, so that now Brooke can now get out of the back of the house—that’s another change.  These are both changes we’d never have thought of if we weren’t forced into it by needing to accommodate the enormous wheelchair, but it applies to the kitchen too.

In fact the accident has forced us to think about our whole house in entirely new ways.  There are some obvious changes coming:  it will have to be far less cluttered, have less furniture, have no carpet or  area rugs, and in general be opened up to make space.  The same sort of thing is true for the garden—to make it accessible to Brooke, it needs to be completely revised.

When Peggy got home from Liz and Dave’s, she got out a tape measure and a piece of paper to draw a little sketch, and it led us to start reflecting on the kinds of possibilities that Brooke’s injury and the change in our ways of living will necessitate—or, rather, invite.  It would be easy to see all of this in a wholly negative light, to dwell on the inconveniences, the disruptions, the expense, the losses and limitations that Brooke’s accident has brought in its wake.  The list of losses—loss of ability to be spontaneous, to spend lots of time out of doors, to go to lectures easily, to travel, even just to go to the movies, is of course long--but as we looked at Peggy’s drawing we started to notice some of the opportunities that this misfortune has placed in front of us.  It’s difficult to capture the spirit of a conversation that goes on between two dear, dear friends between 11 and 12 o’clock at night, when both of them should be in bed, but that conversation tried to capture the spirit of possibilities that might unfold, and there are many of those.   This blog is only one—it would never have been written, obviously enough, if Brooke hadn’t suffered his injury, and it wouldn’t have been written if the injury hadn’t been so serious.  We’ve tried to make something truthful, even sometimes beautiful, out of the suffering of the past year.  But this is true also for the more concrete, ordinary-seeming matter of remodeling one’s house.  Now, we have to think more carefully about how a house functions, what purposes it serves, how it is or isn’t accommodating both for the people who live in it and whether it welcomes people who come to it.   Lots of people remodel their kitchens, but that is sometimes just matter of trendiness or glamour; for us, it requires a complete rethinking of how we can live together in the future, not only with each other but with Brooke’s medical caregivers and with our friends and family.  We have to rethink cooking and eating from the ground up.               About cooking:  Brooke used to be the cook in the house, and he was happy to cook in a relatively modest kitchen—no granite countertops, no warming drawers, no hanging racks of copper-bottomed Italian saucepans—but now he’ll be cooking by administrative fiat—that is, we imagine, reading recipes on his voice-activated computer, telling the rest of us what to stir, what to chop, how much spice to fold in, tasting sauces as they simmer.   But this can be an opportunity too:  we imagine that people will come to cook with Brooke—a joint project, where he offers a bit of culinary experience and sensitive taste buds, and they provide their own culinary experience but also the hands to do the actual work.  The product is a joint one.   (The same goes for working in the garden.)  Already, one of the unexpected benefits of our situation is discovering what our friends eat—they bring wonderful and varied stuff, stuff we didn’t know they made.  Now,  maybe, they will sometimes actually cook it at our house.

 And about eating:   We also recognize that eating, that principal focus of many social occasions, with be transformed too—not only does Brooke have to have food lifted to his mouth by someone else as long as his arms aren’t yet functional, but we can’t go to the homes of friends for dinner because they all have stairs—it’s as simple an obstacle as that.  But while that might be seen as wholly negative, it can be viewed as an opportunity as well—now friends, we hope, will come to us, cook with us, eat with us, in a way that is more communal and close.   We can’t really just invite people for dinner in the conventional way—Peggy alone couldn’t possibly cook it all, and in any case inviting people “for dinner” conveys a somehow more formal message—but we can welcome people for cooking together and then eating what we cook.

The same goes for music.   Brooke won’t be able to go to concerts very easily,  at least at first,  but we hope music will come to us—just as people have been playing music for him in his hospital room—cello and guitar; blues bands; violin duets; classical guitar; harmonicas, and more, we hope they’ll come to us.  We often treated our house as a staging place for jumping off into exotic foreign travel; now home will become, we think, much more of a home, a place music happens, a place much more central in our lives.

It’s impossible to see the future, as we all know, though you can see that we are beginning to think about what’s involved in Brooke’s coming home.  As we are both painfully aware, it is easy to slip into depression under some circumstances, especially anxiety about a radically changed future; depression is a constant temptation.  But it is also possible to put on different mental and emotional spectacles and try to see the rich possibilities that may open up if one can only hold onto a spirit of optimistic open-endedness, and be willing to rethink some of the most basic things about how one lives—including, for instance, something as seemingly obvious as how one lives in one’s house.  

 

 

None of this is to imply that at the present moment Brooke’s physical situation is not continuingly difficult—sometimes he’s blazingly hot, sometimes freezing cold, a matter of impaired temperature regulation.  Relentless days of hard work on trach-mask trials breathing off the vent (5 hours and 20 minutes yesterday, most of it blissfully easy) are followed by a predictable day or two of collapse (only an hour today, every minute of which was a struggle to stay afloat and to stave off panic). Sometimes there’s whole-body pain, though fortunately not too often.  He’s still confined to bed while the wound from his abscess heals, perhaps a week or more to go, and longing to be able to get up into the wheelchair and move around.  Yet we can still imagine a future in which these difficulties subside at least partly and a new era of living well together opens out to include Brooke and everyone who cares about him.   The trick is how to remodel an ordinary home into one that is a source of renewal, not just for its occupants but for everyone who comes into it.  We have been talking about a more “home-based” life; but are only beginning to think through what “home” can mean.  

Setback, then forward

In case the account of Brooke's recent transport to the U hospital for surgery on an abscess seemed alarming, please know that he's back at South Davis now, "resting comfortably" as they say. It's true that he has to stay in bed, not sit up in the wheelchair, until the incision heals. But it's not entirely true that he's resting--he's back at work on upping his off-the-vent times (he's up to six hours a day again, on good days at least) and has a new motorized pedal exerciser for the legs. He says he feels much better--indeed, yesterday he said he felt "great."

(Hooray for big antibiotics and for very attentive care.)

Salt Lake Trib story, text of Part III

Brooke Hopkins: A year after paralyzing accident, setbacks set in

Health » Retired U. professor making progress, but it comes slowly and painfully.

By Peggy Fletcher Stack The Salt Lake Tribune Salt Lake Tribune

Updated:11/13/2009 07:18:23 PM MST

Nearly one year after a bike accident paralyzed him, Brooke Hopkins found himself once again being rushed by ambulance to University Hospital. This time Hopkins was coming from the Bountiful rehabilitation center he has called home for the past nine months. A spreading infection was ravaging his body, sapping his strength and prompting bouts of depression. He had trouble pushing through the breathing exercises he had mastered and, for the first time, even fantasized about starving himself to death. In an emergency procedure near midnight Tuesday, University of Utah doctors cleaned out a tangerine-sized abscess in his scrotum and poured antibiotics into his system. Then they returned him to the hospital floor where he had spent weeks in 2008. Surrounded by familiar and friendly faces, Hopkins felt like he was back where he began -- sleep deprived in a hospital unit that is always active, brightly lit, with endless intrusions and the constant beeping of monitors. Today marks one year since that terrible Nov. 14, 2008, afternoon, when he and another biker collided in City Creek Canyon near downtown Salt Lake City, leaving Hopkins with a broken neck and almost no movement. Much has happened in 12 months. After strenuous physical therapy and practice, the retired U. English professor now can talk and eat, move a few fingers and toes, breathe on his own for hours at a time and drive his wheelchair with a joystick. He dictates his writing with a voice-activated computer program and takes calls from friends on a voice-activated phone. Still, progress is excruciatingly slow and painfully frustrating for Hopkins, a once lively teacher and outdoorsman, as well as for his family. "We've been forced into running a marathon, and we've just completed the first 500 meters," says stepson Mike Battin, who owns a medical-software company in Seattle. "We get closer by inches to the finish line every day." To some skeptics, the one-year anniversary is the finish line. Traditionally, doctors believed patients with spinal cord injuries would see all their potential recovery in the first year. After that, it was nothing but a plateau. Dale Hull doesn't buy it. Neither did Christopher Reeve. With unlimited resources and determination, Hollywood's "Superman" displayed unprecedented movement some seven years after he broke his neck during an equestrian competition in 1995. He died in 2004 of complications from an infection caused by a bedsore. Hull, an obstetrics and gynecology doctor in Utah, suffered a spinal cord injury while jumping on a trampoline in 1999, rendering him a quadriplegic. At the one-year mark, he saw no reason why he couldn't continue to improve. By researching the medical data, he noted that most patients didn't receive any more therapy after a year. Thus, he says, the plateau became a self-fulfilling prophecy. Hull felt liberated by that discovery. After 2½ years of intense therapy, he carried the Olympic torch for 2002 Winter Games in Salt Lake City. Today, he runs Neuroworx, which provides rehab as well as physical and aquatic therapy for spinal cord patients. "The central nervous system does heal," Hull says, emphatically, "but at a different pace and mechanism than we are accustomed to seeing with other parts of the body." Will insurance companies be that patient, though? Peggy Battin, Hopkins' wife of 23 years and a nationally recognized medical ethicist, estimates that so far her husband's recovery has cost more than $250,000. University Hospital charged $147,163.24, for his three months there, but settled with the insurance carrier for $35,178. The South Davis Rehabilitation Center billed an estimated $46,000 a month and settled instead on $11,000. The couple are insured by the U., where Battin still works, and by Medicare, because Hopkins is 67. Together the two policies cover most procedures, with a lifetime ceiling of $2 million. They have case managers at the rehab center and at the insurance company who scrutinize every item of care. So does Sheila Steiner. Vice president of business development for World Trade Center Utah and a longtime friend, Steiner was among the first to show up at the hospital after the accident. Sitting outside Hopkins' room, Steiner had one recurring thought, "This could be me -- either in the bed or in the waiting room. " Not good at casseroles, cleaning or lawn care, the detail-oriented Steiner offered the one thing she could do: organize the bills. So every week from that day to this, she has picked up and tracked the piles of notices from various providers. She has met with hospital representatives, insurance case managers and billing staff. She has spotted errors and worked to correct them. "I have a giant loose-leaf binder, all organized by provider," Steiner says. "Honestly, my agenda is to fight for every penny because there may come a time when there aren't any more pennies." Unfortunately, the couple's insurance case manager was among those let go this week because of downsizing, leaving them without a strong advocate while the company decides whether Hopkins' progress meets the criteria for continued therapy, or whether his support should be reduced to mere maintenance. This has been "the most extraordinary year of our lives with the highest highs and lowest lows," Battin says. "We have come to a greater realism, balancing the tension between outrageous optimism and the risk of resignation." For his part, Hopkins is exhausted but free of infection and back to the rigors of rehab. On Friday, he spent two hours breathing off the respirator. "I'm not gleeful at the moment," he says. "But I don't see any reason why I couldn't continue to improve." After all, he says, one lives on hope. pstack@sltrib.com Continuing coverage A year ago today, Brooke Hopkins, a retired University of Utah English professor, was paralyzed after a bike collision in City Creek Canyon. The Salt Lake Tribune has been chronicling his rehab as well as the accident's effect on his wife, Peggy Battin, a nationally recognized medical ethicist.