Saturday, December 1, 2012

Four Years, 10 Days

Conclusion:  At Four Years          
             Another year and a half has passed, and it is now a shade more than four full years since Brooke’s accident.   The small details are lost, the larger outlines merge into shapelessness; even the biggest patterns of everyday life blur.  But some things are etched into our memories.  At first, during this past year and a half, we were settling into a calmer life, the new, transformed normal life of near-total paralysis—but a pleasurable life, even though punctuated by difficult episodes.  It was a life involving closeness with friends, family, former students, colleagues.  There were local trips to places like the botanical gardens and the aviary.  We showed many visitors our new Utah Museum of Natural History, marveling over the extraordinary displays of early paleontology.  When we took kids with us, they loved the dinosaur exhibits; so did the grownups, and we reflected on the tiny place of humans in the long history of the earth, the even tinier place of our own individual lives.  In that comparatively pleasurable year and a half, we took little hikes, Brooke in the TrailRider and always with a healthy entourage of sherpas and friends, along the trails in the local wilderness. We had intimate little dinners with friends, who came in two’s or sometimes one’s or three’s, bringing delicious meals they had cooked.  Family and old classmates of Brooke’s came to visit for a number of days at a time, always a pleasure in deepening these time-ripened relationships.  
But at the end of February, 2012, another pneumonia struck: it involved immediate hospitalization: the ER, the ICU, the IMCU, the inpatient rehab unit, and  when Brooke came home from the hospital toward the beginning of March, not long before his 70th birthday, there followed at least a month of real debility from that long inpatient period of constant interruption, little sleep, almost no exercise, and of course constrained social interaction. This pneumonia involved a resistant organism that required battleship-strength antibiotics to control.  And the recovery period required not just weeks, but long, slow months, months in which Brooke was essentially homebound, not able to go out for therapy or virtually any other reason. Being in the hospital saved his life, but not without cost.
Sometime in that last late winter, the pain had begun.  The right leg.  The knee.  The lower back.  Sometimes both legs, and sometimes the whole body.   It was persistent, intense.  We grasped at every pain-relief straw—drugs, acupuncture, cortisone injections, pressure-point therapy, a nerve-impulse-scrambler technique, and so on.  The pain was surely exacerbated by lack of motion and sitting down all the time in the wheelchair, but wasn’t diagnosable that way, or treatable.  Pain infected everything.
Then in August, another pneumonia.   Like his previous pneumonias, this was associated with aspiration, precipitated by loss of muscle tone in swallowing.  The pneumonia involved the same multidrug resistant organism as the previous one, not yet subdued.   It meant another three weeks in the hospital. Things are getting scary, profoundly scary.  We don’t know what precipitated this, except the rapid evolution of bacteria as they become resistant to virtually all the antibiotics that have been developed so far.
            Things wore on during the late part of the year.  The previous year, Brooke had been doing extensive, almost exhilarating workouts at the spinal cord rehab clinic, Neuroworx; now he couldn’t even get there.  Another hospitalization was always another setback.  The previous summer, we’d done a little traveling: first to Vernal, then a longer road trip to the Shakespeare festival in Cedar City; this year, we couldn’t contemplate travel at all.  The previous year, we’d done those little treks in the mountains in the TrailRider; this year, there was too much illness and too much spasm and overwhelming lower back and leg pain, always exacerbated by rough or bumpy terrain, to contemplate this at all.  The TrailRider sat in the back of the van, folded up and unused. 
            Brooke’s birthday had come and gone, March 25, without any celebration; he was too weak, too ill.  We’d talked about celebrating this big birthday later, in the summer, but Brooke was never well enough to have a party at all.         
But the August hospitalization also had good consequences.  For one thing, the Palliative Care team came in and, for the first time, took chronic pain seriously. Despite our initial skepticism (no doubt in part because the drug is so closely associated with abuse), Palliative Care instituted continuous low-dose methadone:  5 mg. at precisely 9:00 am, 5 mg. at precisely 9:00 pm. Simple though it sounds, this required intensive in-hospital training of the dozen young people who form our homecare staff, including what to do about breakthrough pain (do not use more methadone!) and how to be absolutely rigorous about not deviating from the schedule.  
The low-dose methadone has been almost magic: the pain Brooke was enduring is, well, gone.   Gone, or almost gone, after months and months and months of despair over whether it could ever be controlled.  I’d want to go on living after all, Brooke had once said, if I could just get rid of the pain. It has even been possible to taper down on the dose, 2.5mg at exactly 9 am, 2.5 at 9 pm, still without the return of too much pain but with much better cognitive function.
The other good consequence of that hospitalization was a long-term tactic for avoiding aspiration pneumonia.  Brooke had had a nasal feeding tube placed initially when he first came into the hospital, a temporary thing, but then got a full-scale, permanent PEG tube that goes directly into the stomach.    A feeding tube!    That’s the place some people draw the line.  They say in their Living Wills that they never want tubes or machines, that they don’t want ventilators or feeding tubes, as if ventilators and feeding tubes were somehow painful and degrading.
            But Brooke’s experience has been different.   People ask him if he misses food, if he wishes he could eat.  They intimate that the deprivation must be awful, especially for someone who enjoyed food as much as he did and loved long dinners in exotic places and relished a nice wine or, rarely, a good stiff drink.  Meals have always been a social time, a time for long conversations, an important part of life; in our earlier days, we would sit at a little table by the window looking out into the garden, spending a long hour at dinner, sharing a bottle of wine and a real marriage’s deep conversation.  But there’s no more eating now, and while you can still put a little bit of wine in through the tube, it isn’t the same.  Those pleasures are gone.
But we try to look at the positive aspects:  not deprivation, but gain.  For Brooke, swallowing had come to seem a matter of constant risk, where even small particles could occasion aspiration and require suctioning: this would interrupt meals, and especially when the conversation was most compelling, when you were paying the least attention to the mechanics of swallowing technique (keep your chin under, your mouth closed, don’t talk).  The threat of aspiration had become greater and greater, and of course the damage done by repeated pneumonias greater too.   
Brooke’s risk of aspiration had been difficult for other people as well, both the home care staff and for people bringing food to share.  He couldn’t eat crunchy things or rough things or things with little tiny seeds, like whole-grain bread or strawberries, and he couldn’t swallow meats or rough vegetables.  Rice, each individual little grain of rice, posed a particular threat.  Peggy didn’t have any better luck in figuring out what he could eat without fear, and people who made huge efforts to think of things he could safely eat brought lunches or dinners of which he’d take one hesitant bite before retreating to the only diet he could tolerate:  eggs so lightly cooked they were nearly raw, yogurt, and mashed avocado.
            So the feeding tube has been liberating, not painful, not degrading.  After all, even with a feeding tube you can still do almost all the important things that are part of the enjoyment of food.  You can smell the aromas of food.  You can admire the presentation of food, slivers of this and morsels of that spread out on a platter, embellished with little frills of garnish or dots of sauce—these are the things that elaborate restaurants devote themselves to.   You can taste food:  you can put it in your mouth, swirl it or chew it or just leave it tucked inside your cheek for awhile, the way Brooke did once with a piece of dried mango.  But you don’t have to swallow it.  You can just put it out of your mouth, the way a winetaster doesn’t swallow the wine, spit it discreetly into a paper napkin or, more elegantly, into a little silver bowl.  Swallowing is after all the least interesting part of eating, and that’s the part you don’t have to do.  
But do you miss eating? people still ask.  Is it alright if we eat in front of you? Do you resent the fact that we can eat and you can’t?   So we adapt. “It’s alright,” we say when people come to dinner, “Brooke has already eaten,”—and it’s true that he’s already had a can or two of the high-protein-with-fiber tube feed formula before the rest of us have dinner, or for that matter can have it funneled inconspicuously into the tube even while we’re all at the table. Tom and Christiane were here the other evening and reminded us of the Vipassana retreats Brooke used to do—long, silent, ten-day sits—where you only eat in the morning, where you don’t eat much, and where you don’t focus on the aesthetic pleasures of eating—pleasure is after all not the goal of these retreats.  So we all joke about what it’s like to take nothing by mouth, to receive nutrition and hydration only through a tube, and about how being liberated from the crass bodily necessity of eating brings you a step closer to some sort of nirvana.   
The feeding tube really has been liberating:  you don’t have to fear eating, and you don’t have to risk aspiration pneumonias in the same constant way.   We see it as a big step forward, not back, making possible much better nutrition and much less risk. Just the same Brooke’s had another infection, and yes, another circuit through the ER, the ICU, the IMCU and back out of the hospital again, but this time it was much much easier: it wasn’t another pneumonia, just some sort of lowly gut organism that got out into the blood.  
Fortunately, Brooke’s most recent hospital episode meant almost no interruption in the teaching he’d begun two years ago, even before he’d left the skilled nursing facility at South Davis and come home:  he’d taught Walden, then The Winter’s Tale, then, ambitiously, the Iliad, then (as an interlude in the summer) Coleridge and Worthworth’s Lyrical Ballads, then also (still during the summer) Shakespeare’s extraordinarily complex sonnets (all of them), and then (during the fall), returning to exploring the development of the epic, the Odyssey, the Aeneid,  Dante’s despairing  Inferno, then the recovering Purgatorio, and finally, Chaucer’s Canterbury Tales.  That’s what he’s doing now—or rather, just finished, exactly two days before the fourth anniversary of his accident. 
The Lama came to see Brooke again the other night.  We remember how crucial the Lama’s visit was nearly four years ago, not long after the accident, and that he’s come several times since both to the hospital and to see Brooke at home. This time, as always, the Lama talked about familiar Buddhist themes, especially the universal nature of human suffering and what can be done to alleviate it through compassion for all sentient beings. He chanted.  He filled our little living room with his enormous presence and love.  But he also said that the way Brooke had spent the last four years, since the accident, not only teaching but also caring for the nurses and caregivers who cared for him despite his own pain by getting to know their stories and their inner lives; caring for his much-loved friends; caring for the students and others he has influenced; and caring especially for Peggy and the other members of the family--that was the right thing, a good thing to do, to bring joy to others despite his own sufferings.  This deep compliment, for someone who has undergone as much sheer physical suffering as Brooke has, is immensely reinforcing.
Yet this time the visit of the Lama was different.  It wasn’t just that this man of such remarkable spiritual substance was coming to comfort someone suffering, but that he’d been enduring suffering too.  Pain, lots of pain, leading up to a hip replacement; pain, lots of pain, after it.  In his day job he is a professor of movement in the theater department, someone for whom the effective use of the body is central, but now he had also become, like Brooke, a medical patient.  The surgery went well and the pain eventually subsided, but it is now as two people each in bodies that have been threatened that they meet, something symbolic of the deeper bonds that can form in the face of human mortality.                                                  
We are, of course, intensely aware of human mortality.  Over the course of the four years since his accident---two years in the hospital, two years at home—Brooke’s had many infections—Staphyloccus aureus, Streptococcus pneumoniae, Serratia marcescens, Clostridium difficile, citrobacter species, Stenotrophomonas maltophilia, acromobacter species, klebsiella species, Enterobacter cloaca, methicillin-resistant Staphylococcus aureus (MRSA), pseudomonas species, pseudomonas species and MRSA at the same time, and Escherichia coli (7 times).    His doctor, not one to mince words, once said straight to his face, “You’ll die from these bugs.”   The new ones are more broadly resistant, more threatening; but at the moment they’re at bay.  
Chaucer’s Canterbury Tales end with an enigmatic Retraction, in which he repudiates almost all his own writings.  Whether it is sincere or not it hard to tell, but it raises a searing question. Would either of us want to retract any of our own lives’ work, not just one’s own writing but the way you’ve tried to live your life, even in extreme situations?  Would it have been better in particular if Brooke had not survived the accident (most people with an injury like this don’t), or had his no-tubes-no-machines Living Will honored, or if he had just given up, cut his losses, said I just don’t want to go through this anymore?  Would it have been better for Brooke if he had exercised his legal right to have the ventilator removed, the cardiac and the diaphragm pacers turned off, all medications discontinued, and die?  We both continue to believe that he should have the legal right to assistance in dying, if that were his full, sustained, freely made choice.  Peggy, seeing at such close range what Brooke has endured over the past four years, says she thinks she’d choose that way, if this accident happened to her, and many, many of our friends say they don’t think they could go through what Brooke has. 
 But what about retracting what one has actually done with one’s life? Brooke says no, he does not want to retract anything, even though at some of the most painful times he has said he wanted to die. Peggy says no too, she wouldn’t retract the choices she’s made to stay with Brooke (many spouses just walk away, or warehouse the patient in some institution), even though it has meant not only immense amounts of work and incessant stress, but enormous anguish, sometimes close to full despair, and always the gnawing sense that she might have been encouraging him to continue living when death would have been a kinder outcome.  It might not be clear whether Chaucer’s Retraction is sincere, but the question is clear to each of us: right now, when the late November sun is shining and optimism is again in the air as Brooke recovers from the recent hospitalization, neither of us would retract the way we’ve lived these years. 
Instead, Brooke speaks of continuity—there’s an odd way, he says, in which despite the disastrous break in my life this accident has meant, it’s somehow connected with the concerns of one of the poets I most admire, Wordsworth, and his conception of the growth of the poet’s mind.  For Wordsworth, the awful accident was the failure of the French Revolution, and he didn’t develop as a poet, indeed, as a human being, until after that catastrophe happened.   The real challenge for me has been in trying to expand my mind enough to comprehend my own catastrophe without letting it become that way.  I’ve tried to just let it be part of me, part of who I am becoming, and to always keep in mind how extraordinarily much I’ve gained, not just what I’ve lost. 
In one way, Brooke’s doing what he always did:  mundane things like reading the newspaper, talking about politics, writing letters of recommendation, preparing as thoroughly as he always has for his classes, helping people think through their applications for graduate school or medical school, and of course voting when the elections occurred.  Peggy is doing what she always did too:  not just running a little one-bed hospital, but still teaching, still working on her research projects, still giving lectures, still traveling to conferences when she wants to, still hiking in the local foothills almost every day.   But in another way, we’re both doing something new: living this curious life that is so much more fully infused with love. 
Love?  That’s because now every minute counts.   There’s the love that friends express every time they call or come to visit, even when Brooke is in the worst condition, love somehow more palpable than in any ordinary circumstance.  You can see it in their eyes, their reluctance to leave, the difficulty of saying how are you when the answer is obvious, awful, or of saying goodbye.   There’s the love that is intertwined with the care that our staff gives Brooke: from all twelve of them, it is tender, respectful, admiring, real, and from most there is genuine love, for Brooke and for Peggy too.  There’s the love that the students in Brooke’s classes show—this has been the case since the beginning of Brooke’s career as a teacher, only now it is even deeper because of his precarious circumstances: the people who come to his classes now are adults who also face mortality and know that in ways that his younger students, past undergraduates, are not yet capable of knowing.  And there is the love, Peggy says, from me, that endures through all this, whatever comes.  It just is. 
As two of the students left at the end of the last Chaucer class—an engineer and a physician—they complimented Brooke on teaching them to read, something that hadn’t been a part of their professional training during their entire careers.  To really read, to do a kind of close reading that is Brooke’s particular forte in teaching.  Brooke couldn’t speak that day because his respiratory problems in the wake of the most recent hospitalization were still troubling—though improving—but these grownup students who have been taking his classes for so long have no trouble remembering what he has brought them, something they’d never really learned as undergraduates or in their early lives. Brooke had said some time ago that he wanted a line from Henry Adams as the epitaph on his gravestone: A teacher affects eternity; he can never tell where his influence stops. He is still a teacher, in spite of all that has happened to him. 
            Next, Brooke promises, comes Melville’s Moby Dick.    He has two months, until the next course begins, to recover his voice and his energy. He is already working on preparing the course: reading the text with the same scholar-friend, planning the sessions, thinking through the deeper significance of this extraordinary novel.  After that it could be Don Quixote, then Paradise Lost, then Wordsworth’s Prelude, then Benjamin Franklin’s fascinating Autobiography, then maybe the three autobiographies of Frederick Douglass, perhaps then even Faulkner’s challenging stories.   One can see life stretching out into the distant future, even if we know it won’t. 
This story doesn’t end, and it doesn’t need to be a tragedy.   It’s still a story of love, even if it’s love under trial.   It doesn’t end as long as we’re here to write it, and it isn’t a tragedy if we can keep from letting ourselves think so.  But we’re also aware of the knife-edge we walk all the time, when the story could end not because we didn’t have anything more to say, but because we weren’t here anymore to say it.