Date for Brooke's Coming Home

Brooke’s got a new date for coming home: December 1. If it holds, it’ll have been two years and two weeks in hospitals.

There’s an enormous snowstorm predicted for tonight in Salt Lake and so no way anybody could (safely) come to visit him. He’s just there at South Davis by himself, watching a film of something (I think The Winter’s Tale) on the TV. That’s like practically every other patient in this long-term-care skilled-nursing facility, alone with the TV. The nurses have always told us that Brooke has more visitors than any other patient in the hospital, sometimes they think more than all the other patients in the hospital put together. It’s astonishing how people can be just abandoned when something bad happens to them, or maybe they had no real connections to begin with. The nurses are great at trying to compensate for this isolation, but of course they have many patients and work to do. Thank you all in every way you have, even by just thinking about him, for making Brooke’s life for the past two years something different. Wish we could do this for every other patient in places like this.

Cognitive Dissonance

 

A day ago, a psychiatrist friend of mine visited me, and I was telling him about the experience of cognitive dissonance that I sometimes have,  could this really be me? Could this really have happened? Sometimes I have a flash of the person I thought I would be if the accident hadn’t happened, and that creates a sense of the unreality of the moment.  It’s a flash that lasts maybe a second.  It used to happen all the time; now it happens more on some days than on others, and on some days it happens very seldom.  It’s like looking at a photograph of yourself before the accident—(there’s one at the top of this blog)—and instantaneously comparing it to what your condition is now.  Could things have gone another way?  This isn’t unique to me, of course; it must happen to anyone who has met with some serious misadventure, some traumatic experience.  The difference between other people who’ve had problems—they broke their leg skiing, they were injured in a car wreck, whatever—is that in at least some of those cases the two dissonant flashes— me now, and me before the event—will gradually resolve.   For someone in my situation, though, with permanent damage, I guess these flashes of dissonance will be a permanent part of life, flashes that move between one’s actual self and the self one might still have been.

 

The person you see in that photograph at the top of the blog, who thought he was walking fairly confidently along on a path toward the future but was obviously blindly ignorant of what the future would bring, and the person you see now, who now knows what that future actually has turned out to be—that’s the dissonant contrast.  It’s not unlike tragedy, where there’s an irony in what comes to be.  Oedipus thinks he’s confidently marching toward the future and has no idea of the catastrophe that lies ahead of him.  He experiences cognitive dissonance at that moment of realization, when he finally understands that he has killed his father and that his wife is also his mother, and that this is the fate that Apollo had in store for him.  It’s not me.  Oh, no, no, noooo,  it is me.   Of course, I haven’t had a tragedy, just a misfortune, though a really big one; but there’s still a dissonance and irony here.

Cognitive dissonance between paths—this is not the path I would have chosen, but it is a path, bordered by suffering, that leads in unexpected directions and towards unexpected results, and who knows how many other paths there might have been or might be.  I said I was tempted by the notion of the future, the lure of thinking about the future.  My psychiatrist friend responded very strongly to those words, temptation, lure--one is very much tempted to lose oneself in thinking about the future--lose oneself, that is.

I was able to think a lot as we talked about how one’s notion of the future can sometimes block one psychologically.  Thoreau speaks of “living laxly in front,” that is, laxly ahead of oneself, into the future.  One of the points of Walden is to somehow be open to the future, whatever may arise.   But, of course, fears and anxieties sometimes get in the way.

Some of the anxieties for me now are about things like whether the “BrookeCare” team we’ve been putting together will work, now that coming home is back on the charts again (though we don’t have a specific date), about getting around in the winter, about what a day at home will look like, about how to select the right home-care hospital bed, about what one will be like at 75.  These are all the sorts of personal and domestic worries that normal people have, perhaps they’re worse in my case, but they’re certainly like ordinary worries.   But these worries are precisely what block one from the sense of openness to possibilities in the future.  “Living laxly” and having a sense of openness toward the future—that’s what neurotic projections and excessive worries make impossible.  Of course, one isn’t always this way: sometimes I can see a whole range of possibilities in the future, even in my condition.  We started to make a list the other day of things I want to do—lecturing, teaching, writing, going to concerts and exhibits, taking the TrailRider out into the wilderness, having parties, forming a meditation circle, traveling—(the doctor says none of these are out of the realm of possibility)—and especially spending time with friends, but when one’s mind is operating on the darker side it doesn’t see these things.   Rather, it sees all the problems that appear to be in the way, and all the anxieties that flood around in bleaker moments, when the dissonance is greatest.  It’s not at all easy to live laxly; one is often contracted in the tight grip of worry.

 

The whole question that we fooled around with before, about whether what happened was an accident, that colliding of bicycles, is still with me.  Many people hint to me that it was part of some kind of design—everything happens for a reason, they say, as if that were consoling.  But there’s a real problem with the notion of “it’s either an accident or it’s by design,” that either/or really trips one up.  The truth of the matter is that it’s neither either/or—It’s neither accident nor design but something beyond, that somehow figures in language, or that language can almost but not quite capture, and my friend said, yes, you can only point toward it, and then he suggested the word numinous as a possible word to use, to think about, especially in the sense of creative power, not divinity.  What about that wordless something, whatever that is beyond either/or?  So we mulled over that for awhile.  The Greeks were struggling with this too: was it an accident that Oedipus happened to meet his father on the road, or Apollo’s design?  Well, it’s both. 

 

So in what sense could we be talking about a path?  Partly, it’s about a road that unfolds before you, depending on how you walk it and whether you let anyone guide you.  Oedipus needs his daughter Antigone to guide him after he has blinded himself; but on a path like mine, even as uncharted as it often seems to me to be, I need guides too—not just physicians and psychiatrists and health professionals who know about spinal cord injury, but people who love you, people who can see who you are when you can’t see yourself who you are, who can take you figuratively by the hand and (figuratively) walk with you, if you let them—but you have to let them at the same time as you are creating the path yourself. 

Was it design—the accident, the pneumonias, every small and large bump along the way?  For the Greeks, Apollo’s whole plan becomes clear:  Oedipus’ suffering has meaning.   Of course, I don’t think there’s an Apollo up there pulling strings with my future or anyone else’s, but the sense of one’s hardships coming to have meaning when they’re understood as part of a path is still real—even if that path isn’t meant in any religious sense exactly, but a kind of laxly living into one’s own open future, guided in some gentle way as you feel your way along by those who care about you.   

 

****

Condition update, after the pneumonia has receded:  Back on the pacer 22 hours a day; can eat everything again, or at least everything he likes; back to energetic physical therapy; happy to have visitors again. Feeling restored clarity, which you can probably hear.  

 

 

Second Anniversary

            Tomorrow, November 14, will be the second anniversary of Brooke’s accident, and hence mark two years in various hospitals, two years of paralysis, two years of breathing challenges, two years of spasm and pain.  It is also two years of the most extraordinary care and concern, more affection and love and deep emotional and intellectual communion than can have characterized practically a whole previous life.

 

How do you celebrate an anniversary like this? 

 

What I Live For

 

            Last night, when we were lying together in bed for the first time in weeks, now that Brooke is back at South Davis after the pneumonia and back in his familiar wide bed, Peggy asked Brooke a kind of overwhelming question.   We’d been reading Walden earlier, the chapter which Thoreau titles “Where I Lived and What I Lived For”, and then there’d been a e-mail in which someone said something about Brooke’s not having anything to live for.  So Peggy asked him, “what do you live for?” just like that.  Baldly—but out of real curiosity, since after all Brooke is the only person who could even begin to answer it.

           

            Brooke said, well, two things, actually.   The first, he said, was more or less Nietzschean, something about the will to live, this strong desire to keep going, not to give up.  Something completely elemental, basic, not really intellectually examined much at all, just a basic instinctual desire.   It has driven him from the very beginning, he said, even though there have been times it was eclipsed by pain or anguish.

 

            The second, he said, has to do with making other people happy somehow, bringing some kind of gift into other people’s lives—even though the situation he is in would seem to militate against any kind of happiness or capacity to give.   Yesterday, even though he’s still on the ventilator again and has a nasogastric feeding tube, he managed to teach the final session for his OSHER class on Walden.  Doing the class at all felt like a kind of gift he could give the students, he said, and the students certainly seemed to see it that way.   Some of what he sees as bringing gifts to others involves allowing them to see the joy [his term] of just living, expressed in the tone of his voice and the energy—difficult to summon, but real—he brings to something like this.   Then there’s writing, the pleasure of collaborative writing, like this, 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.  Of course, just living isn’t always a joy—it’s sometimes sheer hell—and he’s often out of energy, but just the same these “gifts” are real, something he is sincere in wanting to bring to others.  It’s a kind of teaching, he says, not just from books.

 

            The phrase “support system” is something of a cliché, grossly overused in some clinical contexts, but Brooke says he could not have gone through what he has in these now nearly two years since his accident without the support he has had from family and his extraordinary collection of friends.  We have heard of people here in this hospital who have absolutely no one, or very few people who ever come to care for them or to love them.  We heard last year about a wife who muttered angrily, within her husband’s hearing, why are you taking so long to die?   We hear of desertions by husbands, by boyfriends and girlfriends; and while the nurses don’t talk about other patients, thanks to HIPAA, some stories still travel around.   Families don’t visit; patients lose their friends; people living here are sometimes consoled only by their television sets.   In fact, the staff sometimes serves as virtually the only human connection for some of the residents, including both the adults on this floor and the babies and children on the floor above.   But however important these things are, what’s often overlooked is the way “support systems” can work the other way around.   Brooke treasures the “support” people give him, but part of what he lives for, he says, is to give something to them.  This isn’t sappy; it’s about how meaning in life comes to be.  It’s a two-way thing, not just one-way, and it’s the two-way part that underlies much of what he lives for.

 

 

Early on we described a meeting with our friend Lama Thupten, which was enormously significant in the course of this journey.  One of the things he said right off the bat was “The body is nothing; the mind is everything,” and although this bald statement may seem somewhat hyperbolic, it has turned out to be oddly true in Brooke’s case.  Last night, reading the Conclusion of Walden with his class, we talked about Thoreau’s view that physical journeys—to Africa, to Japan, to China, in search of giraffes or whatever--are nothing in comparison to journeys of the mind, exploring the inlets and bays of one’s own inner self.   Be a Columbus exploring new continents and worlds within you, Thoreau says, alluding to a late passage in Byron’s Don Juan,  opening new channels of thought.  Towards the end of the Conclusion, he remarks that if his world were as limited as that of a spider confined to the corner of a garret all his days, the world would be just as large to me while I had my thoughts about me.

 

            What do I live for?  Partly just to live and not give up; partly to engage in the giving and receiving of interaction with people you love and come to love, and partly to explore one’s inner self.  At one point in our conversation last night, he said, this may seem outrageous to you, but I think I’m happier than I’ve ever been.   But then he quickly said, it isn’t always that way; sometimes it’s really, really hard.

 

            

Aftershocks

            A major earthquake is usually followed by a number of aftershocks.  Two nights ago, while Peggy was at a conference on end-of-life issues at Cold Spring Harbor having dinner with, among others, James Watson,  who still remembers Brooke from many years ago, two friends of Brooke’s were at “dinner” with him in his room at South Davis.    Of course, because he hasn’t yet passed the swallow test to determine whether he can eat without aspirating, he isn’t allowed any real food or drink yet.  But he is supposed to practice swallowing, to retrain the throat muscles that grow flaccid when they weren’t being used all the time he was in the hospital for pneumonia and the immediate aftershocks of dehydration and excessive use of painkillers that followed.

 

            The two friends and Brooke devised a game:  they staged an imaginary meal, designed to let Brooke practice his swallowing exercises.   There were supposed to be 82 courses:  appetizers, cheeses, wines between courses,  red snapper Veracruz style, root vegetables, interspersed with different wines and occasional champagnes, with of course sorbets to cleanse the palate between each course; there was a game course with venison; roast lamb with sage and rosemary, delicacies under glass, and much, much more.

Suddenly, in the middle of this repast, an alarm went off: it turns out that the tube that travels in through Brooke’s right nostril to bring in the liquid diet had gotten plugged up because one of the medication tablets hadn’t been crushed sufficiently.  The nurse made various attempts to unplug the line; so did the charge nurse, and then a medic—after two hours of trying, using a wire probe and various solvents, including Coca-Cola (something the oldtimers on the nursing staff swear by), they finally got the plugged tube unplugged.  This ended about 10:00 at night, while the two friends were loyally watching.   But it plugged up again, and two days later that tube was removed and another placed in through the other nostril; this requires placing the tube with a stiff wire threaded through it, which then serves as the contrast for an x-ray required to be sure the tube leads appropriately to the stomach.  It’s not a comfortable process at all, to say the very least.

 

            When Peggy arrived back from her conference—a nonstop trip from JFK straight to the hospital—Brooke was in huge distress, sweating profusely, in extreme discomfort, still saddled with the vent, waiting for the results of the confirmatory x-ray.   After a bit of prodding to get the results, showing that the tube was indeed positioned correctly, we could relax a bit, and Brooke managed to enjoy the afternoon with another friend, one describing himself as a three-ring circus of potential diversion for Brooke.

            But as we sit together in the evening, what’s apparent is a sense of frustration and perhaps even anger with at least some of modern medicine.  True, modern medicine made it possible for Brooke to survive the pneumonia, and certainly would not have otherwise; surviving is the main thing.  That was the earthquake, the pneumonia treatments; but it’s the aftershocks that irritate.  The fancy hospital bed that, however, you couldn’t really sit up in, and so found yourself lying in the same abjectly supine position for a week; the excessive dehydration, just one of various ways of trying to take water off the lung; the introduction of yet another pain drug in order to try to achieve some relief, but at the same time relying on a collection of older ones as well; and above all, perhaps, the absence of a sense that there was some one medical overseer for all this activity, rather than just a series of interns and residents and attendings who change from one day to another in a modern hospital setting.  It’s not that there isn’t someone keeping track of what’s going on, but that the patient doesn’t really see this.    But what’s really the subject of frustration and anger is the difficulty of comprehending what’s going on, and what to consent to and what not, where to cooperate and where to complain, when one is already cognitively impaired by the very treatment being given.    This isn’t of course just a problem for Brooke or for spinal cord care; it’s a ubiquitous problem in much of modern medicine.   Brooke says he doesn’t think the effects of those pain medications have fully worn off quite yet, but he is far, far more alert and intellectually robust than he was just a handful of days ago.    And this is partly what allows him to be mad. 

Bumps in the Road

 

Brooke’s back at South Davis after a sometimes fraught experience at the main hospital recovering from pneumonia and sepsis.   The good news is that indeed, he is recovering, and while he’s back on the ventilator (in addition to the pacer) temporarily and for that matter is still being tube fed, he’s recovering.   The bad news concerns the various bumps in the road along the way, including a dizzying crash due to dehydration and the cumulative effects of too many pain drugs.  Suddenly, it seemed, Brooke wasn’t there at all, cognitively speaking:  completely confused, intellectually vacant, with a fixed stare and tiny pupils, muttering incoherently.   It was terrifying to those around, to think perhaps that even after he’s lost the use of his body, he’d lose his mind too.  But gradually, gradually, he has begun to return to lucidity, one small increment at a time,  first being able to repeat words he was hearing, then being able to put a few words together himself, though often interspersed with mumbling and babbling, then sentences.  Then he asked people to read to him.  And then he asked to listen to Walden.  And now come actual ideas and real interaction with other people.    And now, this evening, as he’s back in the same bed in the same room at South Davis, being cared for one among his many favorite nurses, things are fitting together.  He still has some work to do—getting back off the vent, passing the swallow test so that he can resume oral intake, strengthening his voice, getting back to physical therapy, and much more—but, at least, he’s back to it.  He’s worrying about his course, as usual.   And now he’s even thinking about his plans to teach The Winter’s Tale in the next OSHER semester, starting in January—even before he’s finished the makeup sessions for his current course on Walden that he missed during this rather mountainous bump in the road.