Friday, December 25, 2009

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.









Saturday, December 19, 2009

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.


Tuesday, December 8, 2009

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.





Friday, December 4, 2009

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.