Death and Reunion

            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 50^th 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 50^th class reunion joked about getting together again at our 75^th.  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 50^th 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.

 

 

           

            

Step Down: From the MICU to the IMCU

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.

In the ICU One More Time

           ( 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. 

 

 

 

 

 

Sepsis and Pneumonia

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.

Not So Fast

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.

Pacer Repaired

 

            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.  

Some Difficulties in Reaching the End of a Chapter

            The good news is that Brooke is now scheduled for discharge to home on Sunday morning, the 17^th—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.

 

 

 

Leaving South Davis, Going Home

            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 6^th 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.

 

 

 

 

 

 

 

Writing Classes Read the Blog

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.