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?
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.
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.
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.
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.
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.
( 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.
