Sunday, December 26, 2010
Friday, December 24, 2010
Brooke’s been home for three weeks now and we’ve been trying to compose something about what this amazing transformation is like, but it’s so challenging that we’ve only managed a paragraph or two.
In the meantime, you might like to know that KUED, Channel 7 in Salt Lake, will be broadcasting Ted Capener’s half-hour interview with Peggy about Brooke and the issue of physician-assisted suicide, 5:30pm Sunday Dec. 26. You see her convictions and watch her unease.
Wednesday, December 15, 2010
Everyone told us that the first month or so at home after discharge from the hospital after such a long time would be the most difficult period of the whole experience. They were wrong. Of course, this isn’t to say it’s been easy—indeed, there’ve been some pretty dicey moments—but only that there’ve been plenty of really difficult moments in the past.
Of course coming home was difficult at first—no matter how diligently we’d prepared, there were still plenty of things we hadn’t anticipated. There were constant fires to put out, about staff, about supplies, about insurance, about virtually everything. But there are also positive things we hadn’t anticipated. People had for instance told us that patients often do better at home because they’re not exposed to the really hardcore germs that inhabit hospitals; indeed, knock on wood, they’ve been right so far: Brooke hasn’t had any kind of infection since he’s been home. And he’s making much more progress in physical therapy occupational therapy than we imagined possible for a long time.
We’ve been moving pictures around, from one wall to another. The bedroom now has a collection of etchings from Brooke’s family, beautiful old etchings; this isn’t anything like a hospital room or a jail or a suffocating, claustrophobic room, but one with real aesthetic pleasure, if you know where to look. It’s also possible to sit in part of the house we call the “nose,” a room that projects out into the garden and is filled with light; this is new, too. Light. Sunlight. We’d had broad-spectrum fluorescent tubes put in the ceiling of Brooke’s room at South Davis, but they never really managed to make the place seem like a room filled with sunlight; now we have that, without tubes.
And there are pleasures that might seem trivial or utterly ordinary, but are just the same real. L. filled an old birdfeeder with fresh birdseed; within the hour, the backyard was full of finches and junkos and chickadees. They have their winter coloration, L. explained about the finches, and they feed energetically on a mild day like this, just before a storm. You wouldn’t think that watching ordinary birds outside a window would constitute a major pleasure, but it does.
Tonight, which just happens to be the two-week mark since Brooke came home, we were visited by a group of young people coming in from the traditional hayride that goes around the local LDS ward every Christmas—we assume it visits people with disabilities, people with difficulties, shut-ins, singing carols, though perhaps they just came to sing to us. There were maybe twenty of them, junior high and high school age, with all the half-veiled curiosity that characterizes kids of this age. They sang We wish you a merry Christmas; then Rudolph the Red-nosed Reindeer; then Silent Night, with one utterly beautiful soft but perfectly clear soprano voice singing somewhat shyly in their midst. To be on the other end of this was extraordinarily weird. Weird. Extraordinarily weird. Neither of us ever, ever thought we’d be on the other side of that barrier, to be the person that well-meaning kids were wonderfully kindly singing Christmas carols to. It’s a moment that in a way crystalizes the entire experience, especially coming home where this kind of thing can happen, the way one’s whole identity has changed, at least in the eyes of other people and to some extent one’s own eyes. It’s like reaching old age in 15 minutes. It’s like being in a nursing home and having people come in and give away presents to the old guys. What does it do for your sense of your own dignity? There’s Brooke in his wheelchair, pausing in the living room as the carolers pour in the door and at a signal, begin to sing and the voice of the beautiful soprano lifts above the group; there’s Peggy standing beside Brooke, her arm around his shoulders at the back of the wheelchair, smiling. What is it like now, when you populate the scene that is an object of embarrassed pity by these young people? Of course, some of them will be in your own same spot in the future, but they don’t know that now, and we don’t know that, and of course we would all hope it never happens.
Peggy can remember scenes like this from her childhood. She can remember going with a school group every Christmas to sing at the Washington Home for Incurables (now of course renamed). Brooke can remember visiting their former house-man/chauffeur in south Baltimore; there he was with his diabetes, in a darkened room in a Baltimore tenement house, both legs amputated. Peggy can remember being taken to visit a woman who was in an iron lung, encased forever in a huge metal cylinder with only her head sticking out, there in the living room of her home just a few blocks up the street from where Peggy lived as a child.
I just have to learn to enjoy being dependent on other people, Brooke says, and I do, mostly. But did you ever think you’d have to have your bowels probed every morning, have to be hoisted out of and back into bed in a sling, need two people to give you a simple shower, that twenty neighborhood kids would come to sing Christmas carols to you as a good deed?
You see yourself from the outside, Brooke says, you see this emblematic scene, but instead of somebody else’s being in the wheelchair, you’re the one who’s in the wheelchair. And it isn’t a dream. How often we forget, forget, forget. Oh my god. Oh my god, Peggy.
Everyone on earth will be there some day, in some hard place like this, unless they die earlier. But of course at 66, when I had the accident, I didn’t think I was young, I didn’t think I was old, I sort of always thought I was 33 or something. I never thought anything like this could happen. You don’t want young people to stop caroling for people with disabilities, people with difficulties, shut-ins. You don’t want them to do it, either.
Actually what you don’t want is to be on the receiving end of it. And more broadly you don’t want disabilities, difficulties, shut-in-ness to happen to anyone, but they do.
Tuesday, December 7, 2010
BrookeBlogCANGOHOME12-6-10.doc [posted 12-7-10]
You can go home again—but sometimes it’s not as easy as that sounds. The move from South Davis back to our home on M Street has been a mixture of elation and challenge. Three or four episodes stand out in the middle of six sometimes calm, sometimes chaotic days, though we couldn’t narrate them all here; suffice it to say that things are, uh, getting better. Home is sweet and there are many friends, but also many other folks: from the home care agency, from the durable-medical-equipment company, from the air company that supplies oxygen, not to mention our own staff, cobbled together from a curious range of folks who are turning out to work as a coherent team—though, we must admit, a fully functioning well-oiled care machine is still a good ways in the future. It has been very, very lively, to put continuous commotion in its most positive light.
But there are some surprises. Our house has been inspected for adequate disability adaptedness no fewer than four times, three by the various hospitals that Brooke has been in and once by an independent nonprofit that specializes in accessibility issues. We’ve also received impressive amounts of expensive, high-tech equipment—a fancy ventilator, a suction machine, an oxygen concentrator, a nebulizer, a humidifier, etc. etc. They’re all in the bedroom, ready for whatever respiratory needs might come up. But, despite all the various inspections and our own long experience with this house, no one seems to have thought about the electrical outlets we’d be trying to plug these items into. Turns out they’re two-prong, ungrounded outlets, and there are only a couple of them in the bedroom. Imagine the tangle of outlet multipliers and extension cords, stuffed down by the baseboards where you wouldn’t necessarily notice them—until one sharp eye did. Fortunately, we found an electrician who came within 20 minutes (!), and by today we’ve come all the way up to code.
On the darker side, Brooke had a dream yesterday morning that also speaks to coming home. He’s had many, many dreams over the past two years; the vast majority have had to do with some kind of movement of the legs—skiing, skating, walking, running. In nearly all of these dreams, the objects associated with the leg movements have been defective—the skis are broken, the skates are warped, or he has had some kind of limp making him walk way out of balance, and so on. In all these dreams, however, he has never fallen, and even in the most precarious situations he has managed to stay upright. These dreams are an obvious reflection of his paralyzed condition, but a condition still seen as only partial. A few other dreams have involved blissful swimming, or diving off a platform 74 feet high and landing like an Olympic diver in the water below; these dreams don’t involve limitation at all. Both kinds are surely compensatory dreams, reflecting the wish to be whole again, and not broken.
Yesterday morning, however, Brooke had a dream that he says was truly strange and frightening, perhaps reflecting not only a kind of farewell to his previous hospital experience but the terror of coming home, even though he’s been aiming for home for so long. Perhaps emerging from the deepest layers of his subconscious, he dreamt that he was a female tigress confined to an extremely claustrophobic room on some kind of death row, along with many other tigers and tigresses, waiting to be executed for reasons he could not understand. (Shades of Kafka, someone remarked.) The room was stiflingly hot, and at one point his jailor or perhaps his hospital attendant came into the room, and he pleaded with her to open the tiny window behind him to give him some air. A slight breeze entered the room, but that alleviated the suffocation he felt only to a minor degree. He could envision the rooms and their other condemnees stretching down the long corridors of this death row. He began to emerge from the dream, but was still in it, and he called out to the respiratory therapist working that night, help help, help. Only gradually did her actual features begin to form in his eyes. She asked questions like, what’s the day of the week? Do you know what your name is? Where are you? But he was still trapped in his dream and could not escape from its grip. Only gradually did his own room—the bedroom he had slept in for the past thirty-three years--become recognizable, and then only very, very slowly. During this whole concluding part of this dream/wake experience he kept slipping back from external to internal reality, a subjective reality that appeared no less real than the world, so to speak, outside himself.
We’ve played with interpretations of this dream. Brooke says he doesn’t want to go into it—let the dream speak for itself, but it’s clearly a dream about confinement, limitation, what it’s like to be paralyzed in a home in which one once ranged freely about, and of course the fear of impending death. Peggy’s reading: it’s about a tigress, a figure of major, elemental power. This is a dream about coming back into power, part of what coming home involves.
What’s it like to be at home, after two years and two weeks away? There are losses: there never seems to be any time to listen to all those enormous books on tape the way there was in the hospital, in between interruptions for vital signs, cough assist, cathing, and so on: everyone who works for us here is here just for Brooke, the only patient, and always has time for him. Of course, these longer interactions are a gain. There are losses in efficiency: we have to check and doublecheck everything that’s done for Brooke, and train each other as we go. But there are gains: training visits from the home care company; they also send an absolutely wonderful physical therapist who rolls Brooke around on the mats, doing trunk work never imagined earlier, and a great occupational therapist and a bath aide who, to our amazement, actually admires our homemade shower chair: instead of plumping for the $2800+ conventional medical shower chair we didn’t think would be covered and is furthermore bulky, ugly, difficult to store, and institutional-looking, we’d fashioned our own out of a reclining lawn chair fitted out with four casters on the bottom ($100 for the lawn chair at REI, and $50 for the high class casters). (There’s a tiny part of the larger story here about the high cost of health care, something we’ve been learning a lot about.)
There are even new realities in social life. Friends have been dropping in, sometimes bringing food, and it is wonderful to see them and to have it be so much easier for them to visit here than to trek up to South Davis, though they recognize that exhaustion can set in pretty quickly. Just the same, we all recognize the progress that comes with being home and the respiratory and physical progress that is still occurring: no longer having to conform to a hospital schedule; being able to be up in the chair for many more hours a day, doing quite demanding physical therapy, to be able to look out the window into the garden, and, most Brooke-like of all, being able to converse with all sorts of people almost all day. It might sound limited, but it’s really pretty good.
It’s late at night as we write this. He’s falling asleep, but he says, wryly, adieu, dear audience, we bid you adieu temporarily, while we catch our breaths.
We’re catching our breaths, in more good ways than one.
Wednesday, December 1, 2010
Tuesday, November 23, 2010
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.
Sunday, November 21, 2010
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.
Saturday, November 13, 2010
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?
Tuesday, November 9, 2010
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.
Saturday, November 6, 2010
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.
Wednesday, November 3, 2010
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.
Friday, October 29, 2010
A few months ago we wrote an entry about our dear friend George Wenckeback, whom we called Bono, the entry with the great picture of Brooke with Bono at his wedding. Tonight Bono’s wife Diane called to say that he had died. You could hear it in her voice even before she told us; we’d known it was coming.
Bono had been diagnosed with a rare, aggressive cancer eight years ago, and at the time given six months to live. He’d gotten five really good years, and then three years of pain. Bono was a great model, a man with an extraordinary will to live, genuinely extraordinary. He’d survived long beyond what was expected, and he kept surviving and surviving and surviving, even again these terrible odds.
This blog entry is a personal one for us, but we also want to mourn publicly Bono’s death. Hardly any of the readers of this blog knew him, we assume, since he wasn’t a friend from the usual circles of Brooke’s past, but that doesn’t make any difference; the death of a beloved friend can be shared by all of us.
By an odd coincidence, I celebrated my 50th prep school reunion today with my former classmates. The school is in Lakeville, Connecticut, two thousand miles away. I’d hoped to be able to travel there—we’d begun making arrangements as long as a year ago—but in the end we did it by skype. Moved by Bono’s death, it leads us to reflect on how many classmates have already gone, how many couldn’t be there, but a huge proportion of the class still was.
It was a delight to see these faces: some of them faces I last saw 50 years ago, when we all graduated; others are faces of friends I still see frequently, and who’ve come to see me in Utah. One of them had just come back from visiting a classmate, C.C., we’d both known well who now has advanced Alzheimers—he’s gone, he said, several times, as if it were impossible to believe, he’s gone. He’s gone. My friend pointed out that while C.C. still has a body, he has no mind, and while I have no body, or at least no functional body, I still have a mind. That’s what’s made all the difference to me, to be able to read, to think, to teach, to teach a book as demanding and deep as Walden. But, oddly, Bono—the old friend who has just died—doesn’t seem to be gone. He seems to be still present, or, rather, what he represented is still present, that extraordinary will to live against all odds.
Someone from the 50th class reunion joked about getting together again at our 75th. Of course, we all know that almost none of us, if any, will still be alive then, and when I see these faces on the computer screen via skype, it’s like a time-slice of the present, but which foreshadows the future as well as remembers the distant past. It’s true that the death of a beloved friend can be shared by all of us; but the future deaths of our classmates and beloved friends can be shared by all of us now, too. This isn’t macabre; this is just a simple fact, that in celebrating a 50th reunion, even if what my former classmates are seeing on the screen is a motionless guy in a wheelchair with a feeding tube sticking out of his nose and I’m seeing guys who’ve kept themselves in pretty good shape and look like pictures of success, enjoying cocktails in their sports jackets and ties, the deaths of beloved friends will be increasingly mourned by us all. It’s a cohort of classmates moving through the age spectrum together; that’s perfectly natural, and we all know what will be coming. We are the friends who will be mourning each other, and even though Bono wasn’t part of this group, and even though C. C. isn’t fully gone, still that awareness of finitude for all of us is what this day of now-mourned death and skype-celebrated reunion brings.
Wednesday, October 27, 2010
Brooke’s condition has improved enough to be transferred from the MICU to the IMCU, acronyms that label the unit of most intense care and the step-down unit that provides intermediate care. This might seem like progress; but there are still challenges. He was (by his own account) going crazy yesterday, when he was required to have the cuff on his trach fully inflated and so couldn’t talk at all. He was desperate, anguished, fearful, depressed, and I think it’s fair to say existentially frightened, since it felt not only like going backwards from the MICU but robbed him of his greatest asset and strength, the ability to communicate. It was awful to watch, and surely more awful to endure.
But the unit put a solo nurse on with him last night, and then changed his medications and ventilator settings today. He’s been perking up throughout the day, and tonight, just before bedtime, a friend—the assistant for the OSHER class he’s been teaching—is reading aloud to us from Walden, preparing for class next Monday. Brooke looks as if he’s peacefully asleep, but actually just has his eyes closed while he listens, intently. She reads; he corrects her pronunciation. Vitiate, for example, not vittiate. She remarks on how extraordinary it is that he’s paying this close attention when he’s been so sick, but he keeps right on going, letting her read, commenting on the text, demanding keep going. Brooke has all of Walden memorized. (He protests this characterization; he insists, “I just know my way around it.”) They’re reading “The Pond in Winter,” describing Thoreau’s soundings of the pond, and then the section on cutting ice, and Brooke is talking about the ways in which ice was cut from Walden Pond, sometimes as much as a thousand pounds a day, and shipped all over the world including to India, to ports Alexander only knew the names of, but never actually reached.
It turns out Brooke’s got the footnotes of the scholarly edition pretty much memorized too. And, it seems, he’s getting pretty much back to where he was before. The doctor apparently says he can expect to go back to South Davis this Friday or Saturday, to regain enough strength after this pneumonia to come home.
But Brooke is already thinking about how to teach his class there if he can’t do it this week in our living room.
Either way, he says, he hopes the class will come to some consensus about this enigmatic chapter. “The Pond in Winter.” I never promised this class an easy book, he says, It’s what takes us out of our lives of quiet desperation. It’s the real thing. And this accident, it’s what also takes us out of lives of quiet desperation: it’s about suffering and pain opening up friendships. It opens up worlds and worlds, and Walden only complements those worlds it opens up. It’s the perfect book for this situation.
Thoreau says he went to the woods to face life squarely, to live life deliberately. I didn’t do this deliberately, but now that the accident has happened, I’ve wanted to face life squarely too; it’s like a scimitar cutting me in half. And here I am, living, breathing, with my dear dear friends. This is the real thing. This is not a joke. I have to keep reminding myself. There’s nothing to think about, nothing artificial; this is the real thing. You try to extract every morsel of meaning out of life, and if you die tomorrow, you will have extracted as much as you can. I treasure my breath, even if it’s painful; I go on teaching, teaching—no, he corrects himself, I go on learning, learning.
Monday, October 25, 2010
( From Brooke, speaking with effort around his still-inflated trach cuff in a growly voice):
It just somehow had to happen this way, that I would end up back in the same ICU where I was after my diaphragmatic pacer implant, the medical intensive care unit at University Hospital. You may remember my description of my room in this unit, the one with the television eye staring down at me from the ceiling. I’m now in the same kind of room, right across the hall. Few things have changed. I’ve got a call light this time, rigged up so that I can puff on it by the PT we remember from South Davis so well, Dominic, the clever mimic and teller of great Basque jokes, who now works here. But that’s about the only change. It’s a room that’s completely claustrophobic. I asked my nurse this morning if she’d ever heard of Franz Kafka (she hadn’t), and I tried to explain what Gregor’s room must have looked like to him as he metamorphosed into a cockroach, but I don’t think she understood. (Do you suppose this was entered as “confusion” in my chart?)
So here I am back again, just a couple of weeks before the second anniversary of my injury. I’d been in the surgical ICU originally; this ICU emphasizes respiratory stuff, and with pneumonia, here I am again. It seems full circle, in a way.
In retrospect, I might have known how peculiar my symptoms were on Friday morning, the morning before I ended up back here. I woke up unnaturally chilled. I had a nice lunch at noon, but later in the day I couldn’t maintain any kind of equanimity, despite the fact that the day before had been an exceptionally well-balanced one, one of the best of all I’ve had. I’d done 20 hours on the cap, but when I woke up I was feeling wretched and frozen. I thought it had to do with the impending storm. Then at dinner everything crashed, and I felt really, really sick—dizzy, with slurred speech; I couldn’t concentrate. Fortunately, I had a friend to keep me company while the staff huddled interminably at the nurses’ station contacting the doctor; the minutes seemed to tick by endlessly, and I kept asking my friend where they were. Finally, they came in and told me they’d ordered an ambulance to take me to university hospital for “observation.” By that time, I was somewhat delusional. Now, I only remember the five burly Gold Coast guys loading me onto a gurney, raising the gurney to an almost vertiginous height, and wheeling me out to the ambulance. I also remember one of the night nurses saying to me as I rolled past the nurses’ station, Good luck, Brooke. Then down in the elevator, out into the freezing night air, then hoisted into the ambulance and bagged the whole way to the hospital. But they forgot the suction machine. They asked if they should go back to South Davis to get it; I said no, but in the light in the rear end of the ambulance I could see four of these fellows bending over me trying to calm me down, as I tried to control my panic but of course couldn’t. I remember that it was 5 minutes to 8 when we left, and I kept staring at the clock the whole trip, because I didn’t think I would make it to the hospital at all. I know the road to the university hospital almost by heart now; I know the traffic lights; I know where the road goes down past the refineries, then up a long pitch and past the Capitol, then down into town. At one point I asked where we were, and one of them said, we’re heading up Victory Road toward the Capitol, you take a left at the bottom of the hill. I know every inch of that road by now. Peggy drives this road when she’s coming home from South Davis. For each of us, it’s always long.
I’m in the same Kafkaesque room as before. This time I know the ropes, so to speak. But last time I’d just gotten the pacer, and there was lots and lots of optimism. This time it’s a matter of clawing back from a setback, though things are looking up: the pneumonia is a common pneumococcal one, reasonably easy to treat; other things are falling into place, and tomorrow they’re planning to reintroduce the pacer, my old friend, as I’m weaned from the ventilator I’m on at the moment. What’s next? I expect to be here a few more days, then perhaps back at South Davis until I get back to strength, and then finally home. Today was to have been the day of homecoming—already postponed several times, but still clearly in our sights.
Saturday, October 23, 2010
Last week might be dubbed The Week of Wonderful Visits, at least if it were the only such week—there were friends from California, the very first friends to fly in to see Brooke after the accident almost two years ago, who’ve visited often since then; there was dinner with a former colleague, who’d been away for the summer and indeed much of the year, but with whom friendship has deepened in spite of distance; there was the extraordinary PT and her father, who regaled Brooke with tales of ranch life in Zimbabwe before the large landowners were kicked out and he eventually sought political asylum in the U.S. (not all these tales were funny, actually), and breakfast with a local friend, which apparently involved two and a half hours of laughter—the kind of breakfast of which the friend later said, that was what I’ve been hoping for for Brooke, the best so far ever.
The next morning, Brooke woke up with his entire skin ice cold, with his blood pressure dropping, and by afternoon was mumbling incoherently. To make a long story short, he’s now in the Medical ICU at the University Hospital, admitted with septic shock and what is assumed to be aspiration pneumonia. He is actually pretty sick, really sick, but that seems to be coming under control with antibiotics and pressors. They’ll place a nasal feeding tube by fluoroscopy in the morning—they can’t do it the usual way, because he had so much radiation for sinus problems as a kid in the 1940s (does anyone remember those days?) that he can’t easily tolerate having stuff poked into his nose. He hasn't had anything to eat in over 24 hours, but a resident we both liked very much explained that humans are quite well adapted to periods of fasting and starvation--so there's nothing to worry about in terms of nutrition for the immediate moment. We're trying to think of it as being in a monastic retreat, though that's tough with the alarms from the drip machines sounding off all the time.
This is a pretty big setback. Obviously, he won’t be coming home Monday. We haven’t any idea of how long he’ll be at the U, then how long at South Davis, or what kinds of residual difficulties he might have. But he is alert again--and discussing Walden.
Wednesday, October 20, 2010
Tuesday night. We’ve just heard from the doctor that Brooke isn’t to go home tomorrow morning, Wednesday, as we’d begun to celebrate, but will be required to stay in until the following Monday in order to make sure that training of our staff concerning the pacer and the ventilator (which he uses at night) is adequate and, presumably, that his condition is otherwise good enough for discharge.
This is a major disappointment—we were both psyched and ready to go forward, and even though it means an immense change in our lives, we were ardently looking forward to it.
We’ve talked about this delay. Of course we’re disappointed—but we know in our heart of hearts, as the saying goes, that the doctor is right: despite all the dedicated training that’s been going on, not everyone working for us knows how to avoid disrupting the pacer, knows how to inflate the cough during CoughAssist, knows how to use the vent correctly. Brooke’s sense of security seems adequate for coming home; but we know that’s not all that’s at issue.
We know there are risks in coming home, where we can’t have professional care all the time. These are risks that Brooke is willing to take; we just don’t want them to be quite as big as the doctor suggests they could be. Thus we’re grateful for someone who’s eager to make sure this goes right, even if it does take a substantially longer time.
Get it right. Not so fast. Monday will be soon enough for now.
Saturday, October 16, 2010
Back to the new normal, now that the pacer has been repaired. Brooke is extremely happy to be off the vent again. Next comes a 48-hour observation period; then we expect homecoming, probably Tuesday morning. We’re all relieved that the pacer failure problem was indeed external—a little problem with one of the leads that comes out through the chest, which perhaps got snagged on something—but it was an exciting repair to watch the doctor perform, rethreading the wires of the errant lead through their tiny connecting pins and then crimping them on. When the pacer was restarted it gave Brooke a good introductory jolt and then showed all four AAAAs on the readout of its battery pack, indicating perfect connections. We all just about cheered. Brooke says the pacer is way more comfortable than the vent, and is now the good new normal again. What happened is apparently a very rare occurrence; and because the thing is now anchored in place, it’s not at all likely to happen to Brooke again.
Tuesday, October 12, 2010
The good news is that Brooke is now scheduled for discharge to home on Sunday morning, the 17th—just short of two years after his accident. It’s the end of a chapter. Over the past few weeks and more, the two of us have been putting together a rather extraordinary team of caregivers, including those with nursing experience, respiratory, and other backgrounds, even drywalling—but all either already trained or being trained with Brooke. Some of these folks we’ve already known, and thought they’d be good; some have responded to ads we’ve placed in various places. Brooke does his own interviewing, with his usual unerring instincts about the qualities people have, and it’s a really great team we’re putting together, even if it includes a lot folks who might seem to be amateurs. It’s on the spot training, and there’s been a lot of it going on.
But there aren’t any straight lines in anybody’s therapeutic experience. There was a rather sobering swerve today that we wanted to tell you about, because it features some rather heroic activity on the part of various people. As Brooke was being hoyered into his wheelchair to go down to physical therapy, the alarm signal activated on his diaphragmatic pacer. The alarm stopped briefly, then it alarmed again, and before long, the pacer showed all four Xs on its readout, one for each of the electrodes implanted in his diaphragm, for “connection failure.” It beeped incessantly.
This is a nightmare scenario for anyone like Brooke who is dependent on a mechanical device in order to breathe—though many other patients are still more fully dependent than Brooke. Fortunately the aides and others who were on the spot when the pacer failed responded very quickly to this emergent situation, and Brooke could breathe on his own without the pacer for some minutes, even though he was somewhat panicked, as anyone would be. One of the aides used an oxygen bag to pump air into his lungs; others tried to figure out what the problem was; then with the alarm still beeping constantly—a rather unpleasant sound under the circumstances—the head respiratory therapist came down immediately to try to troubleshoot the situation. He tried every tactic he could: disconnecting and reconnecting the leads, changing the batteries, etc., but Brooke was eventually put back on the ventilator.
The doctor arrived somewhat later and immediately went to work, examining the wires that go into Brooke’s chest and down to his diaphragm. He’d already contacted the manufacturer of the pacer, right on the ball, and so had a hunch about what might be the case: it was the fifth wire, the anode that connects the circuit that, they thought, might need re-crimping. But what was impressive was the care with which the doctor examined the wires, and the precision with which the manufacturer treated the situation—it requested photographs of the leads, of the connectors, even of the battery pack showing the XXXX reading—and indeed the concern exhibited by everybody involved.
This, coincidentally, was the day the state inspectors were visiting South Davis. They’d already left by the time this happened, but we wish they could have seen this. They’d have been impressed—it is after all just what they should be looking for, but don’t always find, in health care facilities.
As we said, there aren’t any straight lines in medical narratives—there are always unexpected bumps and swerves. This is sometimes extremely difficult to live with, Brooke says, though we both know that we’ll have to live with such things for the foreseeable future. Health care is full of uncertainties; that’s the name of the game. If there’s anything we’ve learned over the past nearly two years, it’s to expect the unexpected, often the unpleasantly unexpected, like infections, like wounds that don’t heal, like pneumonia, like pain. But Brooke had been in brilliant form for the past couple of days too, his trach capped almost all day and on room air, not to mention the intellectual sharpness and good humour he has sometimes lacked—that period of brilliance had been unexpected too, but great. Indeed, his next class on Walden is already prepared in this head, and the thing that worried him most during today’s swerve was whether he’d be able to teach.
He will. He’s absolutely committed to it. And it’s a real swerve, upward.
Thursday, October 7, 2010
Last Tuesday morning, we lay in our own bed in our house on M Street, after Brooke’s third overnight home visit. We were having tea—tea latté, actually—and reflecting on what has transpired over the past nearly two years. It seemed as if something were coming to an end and something new was about to start.
Brooke had just taught his third class on Thoreau’s Walden the afternoon before, and that evening friends had joined us for drinks, and then others for dinner. We had a congenial dinner, Brooke in his big wheelchair and others sitting around our new little high table, so we’re all at approximately the same height: a nicely roasted chicken and a gentle wine. Then there were the usual bedtime medical rituals, translated to home, and Brooke slept peacefully, with Julia doing all the night care so expertly and silently that it didn’t even wake Peggy beside him.
The next morning—before the tea latté—there’d been the usual cathing, CoughAssist, bowel care, oral care—but these were over, and we had an hour by ourselves to talk over what being at home in our house and together in our bed represented, before Brooke had to go back to South Davis for a trach change and other care.
Early on, not too long after the accident almost two years ago, we’d said to each other that we can still have a nice life together, and now we were recognizing that that was almost upon us, as we prepare for Brooke’s discharge from South Davis. For one thing, we’d always visualized that nice life together as taking place at home, but Brooke’s been in the hospital for almost two years. Now, we were talking about how we’d gotten to where we are now, almost through this long period of institutional life and on the verge of coming home—probably next week--and how important the support of other people has been. Our anthropologist friend who’s interested in networks of relationships and how communities work across cultures had been talking about how crucial the support for us here had been while Brooke has still been in the hospital, and we were talking about it again. There are all kinds of conventional terms for what that evening was like—“basking in the warmth of friendship,” for example. But these aren’t necessary; my overall impression was just one of extraordinary peace, says Brooke, that evening, at home among a close few of our friends.
Somehow the terror of the prospect of going home, where there’s no continuous professional care and the resources of a hospital aren’t immediately available, has receded, and actually being at home was an amazingly rich and secure-seeming experience. It’s home, after all, although South Davis had certainly become a kind of home too.
But going home means packing up—almost two years’ worth of stuff. This afternoon, at South Davis, Peggy’s been cleaning out the dresser in Brooke’s room. It has four drawers—one for clothes, one for medical items, one for miscellaneous items like sticky notes, marking pens, a corkscrew, and of course chocolate bars. But there’s also a drawer entirely filled with cards and letters, accumulating since the early days in inpatient rehab at the U, and continuing to accumulate here. It’s a wonderful drawer with many missives of affection and love. It filled in to a depth of maybe four more inches during Brooke’s “virtual birthday,” the one in March 2009, with an overwhelming shower of cards and letters, and it’s always been the drawer in which we’ve tucked notes and e-mails and letters too touching to throw away—in recent months it’s been so tightly packed it’s almost hard to open the drawer to stuff anything more in. It’s affection, expressed.
Indeed, there’s a lot of love and friendship that’s been extended to me over the past two years, Brooke says, more than I could ever have imagined possible. But at the same time I’ve learned a lot about my own moral flaws. I haven’t reached Kohlberg’s 6th stage. I’m not truly compassionate when it comes to the distress of others, and I tend to think of the ways in which it affects my own situation. That’s not good.
For instance, when I hear about C.’s herniated-disk back problem, I don’t feel the deepest sympathy for her; I think about how her injury complicates our situation. She’s one of our caregivers arranged for when I’ll be home, and now she won’t be able to come. When I think about it more, I have more sympathy for her, indeed empathy for someone in pain (which I know so well), but I haven’t yet achieved that condition of moral elevation in which I can care only about her pain, not mine. I was thinking more about how are we going to fill in this space in our lineup of people?—that’s an awful thing. I’m afraid I’m selfish in that regard. It’s true that my situation requires 24/7 help, but for her, it must be awful, a herniated disk. That’s a terrible thing, with real pain. My heart should go out to her, fully, but it doesn’t go out far enough. So I have not reached a level of outgoingness that I should have reached; there’s still too much self-concern.
This is a religious moment. I’m not telling you this for the blog. I’m just telling you this; it’s what I think about in the middle of the night. How to be a better person. It’s like recognizing all the times you just went about your merry way, disregarding the sufferings of people around you, who lost their children in automobile accidents, or who are losing their wives or husbands to cancer or dementia or other awful diseases, or any of the myriad other ways real people’s catastrophes occur, and I don’t even notice. Or if I notice, I don’t do anything. Or if I do anything, it isn’t much, or isn’t enough. There’s always more one could and should do.
I should have sat down for an hour to compose a letter instead of going on a bike ride, about five years ago, when one of my colleagues’ daughter died of a sudden heart attack. I still regret not doing this. I can see what it would be like to be a good person, but I’m only about halfway there. It makes me ashamed.
Peggy asks a question: But Brooke, you of all people, with the pain and respiratory threats and paralysis you suffer, how can you even imagine that you ought to be primarily concerned with the sufferings of others, when yours are so great? Isn’t that what people would say?
Well, they can say it, Brooke answers. But I don’t think they’d be right.
Friday, October 1, 2010
This week Peggy taught guest sessions for the students in two of photographer/writer Steve Trimble’s Honors writing classes at the University of Utah. These classes are focusing on writing concerning personal experience, and it’s for this reason that she was asked to visit and the students have been asked to read portions of this blog.
It’s a remarkable experience, I must tell you, Peggy says, to be in the company of people who’ve been asked to read this blog, but who don’t know Brooke, who are much younger in age, and who for the most part don’t have experience that is anything like his—but who pose often extremely interesting questions about it. Steve has asked the students to write to this blog this week, so this little entry serves as the posting-place for their comments.
To the students: I hope you’ll each post some version of the questions and reflections you raised in class, and of course more. Brooke will read it. There’s no need to offer platitudes; say something about what reading about his experience jostles in you. To blog readers: Just click on the tiny word “Comments” below this entry and you’ll get to see something of what these sometimes extraordinary writing students have to offer.
Sunday, September 26, 2010
Last Monday, Brooke taught the first class he has given in two years, since the week before his accident. It’s on Thoreau’s Walden, a book he says that if read closely and attentively enough, can completely revise your ways of thinking, not just in the chapters “Economy,” “Where I Lived and What I Lived For,” and “Reading” that he’s covering tomorrow, but throughout. While his former English-Department colleagues might quibble, Brooke says it’s one of the best examples of the sublime in literature anywhere.
Teaching Walden is a double milestone. He’s teaching the class, and he’s coming home for the day (and the night) to do it. He’ll do that every Monday for six weeks, or until he’s ready to come home for good. We haven’t been ready to brag about how well the first class went, but perhaps after tomorrow’s session we’ll be able to tell you some of the details. It is a milestone, a big one.