Sunday, August 23, 2009

Looking Back: University Rehab, Part I

Now we’re going to pick up the narrative of Brooke’s earlier hospitalization that we dropped when Brooke reached South Davis. He recalls,

I’d spent three months at the University of Utah inpatient acute rehabilitation unit, known as Rehab II—from early December 2008 to early March 2009. I came to Rehab with pneumonia. That fact determined nearly everything that happened in Rehab. The whole time I was there I was trying to recover from the pneumonia that had developed out of a bad cold I had contracted when I was working for Obama's campaign in Colorado. I had it at the time of the accident, and it continued through the whole ICU and IMCU episodes. By the time I reached Rehab it looked as if the pneumonia had abated somewhat, but that proved to be illusory. And there was fear that I had a serious infection.

My respiratory therapist at that point was a remarkable man named Gil. I had him almost every day for the first couple of weeks and he tried nearly everything to clear out my lungs: suction, chest compressions, and whatever other techniques he could come up with. Finally, the team, including my doctor, decided that they would call in Pulmonology for a more specialized effort to solve the lung problems. All this time I kept hoping that the next solution would be the right one. It's amazing how my hope remained sustained throughout this whole period, and Peggy too, as we both kept grasping at straws to try to solve the terrible pneumonia problem. But hope can also be unrealistic: all this time we also imagined I’d be well enough by the end of March to teach a Shakespeare course for adults.

Calling in Pulmonology initiated one of the most bizarre episodes in my entire experience of the results of my injury. I should include Peggy here, since she was involved every step of the way in this process. They decided to do a bronchoscopy, an effort to examine the interior of the upper lungs and clear out the secretions that were causing so much trouble.
The first bronchoscopy was held in my room at Rehab. Three men were involved: the chief of Pulmonology, a tall, broad-shouldered man with thick, wavy black hair, wearing a dark jacket and dark tie. If you were in a humorous mood, you might say he looked a little like a vampire from the Carpathian mountains; in any case, he was completely expressionless. Along with him came a compliant resident who did most of the work and the technician who was responsible for the monitor that showed my lungs as if on a TV screen. The work consisted of running a scope with a light on it and a suctioning device down through my trach and into the bronchii. I had expected that I would have some kind of anesthesia; I asked for an Ativan and they said they would take about 20 minutes to work. Being polite, I thought that was a long time, so I said I’d do this procedure without anesthesia. I looked straight into the chief’s dark eyes; they remained expressionless. I mistakenly read this as an affirmative, that the procedure had been done before without anesthesia with no problematic results. Of course, I was reading into his face, which really said absolutely nothing. Why he didn't tell me that I shouldn't select this alternative to anesthesia is still a mystery to me, because the results were a disaster. The second the probe with its suction device and its little camera and light were inserted into my throat and bronchial tubes I began to choke and continued to choke throughout the whole 25 minute procedure. At first, stupidly, I thought this was part of the whole routine. I could not look at the television screen because looking at it only increased my acute distress from the choking. Occasionally, I would stare in the face of the chief pulmonologist who still remained expressionless, almost, in my confused mind, sadistically so. Finally, after 23 minutes, to be exact, my distress became so great that I had to stop what was going on. No, he wasn't really like that. The resident said that this would be the last probe. But I had been at the end of my tether for at least the last 10 minutes.
The same team arrived to perform broncoscopies on two further occasions. The second time, they brought lidocaine—though I hardly thought lidocaine would do the job, given how much pain I’d experienced the first time around. But it did. They squeezed it onto the scope as they were inserting it; it made a great deal of difference, although there were the occasional gags. After it was over, I said, Well, the lidocaine worked; and the resident said, Well, maybe we should have brought it the first time.
On the third occasion, I was actually able to watch the procedure on the screen, and see the beauty of the branching interior structures of my lungs--described in an earlier blog, but not at all forgotten.

Meanwhile, in other parts of the hospital, a machine that could have cleared this problem up was already in use, something called CoughAssist. But it wasn’t in use in Rehab, for reasons that still aren’t clear to me—apparently because although some of the respiratory staff were already trained in its use, it simply hadn’t been cleared yet. What went on now was behind the scenes, out of view from us, the politics we suppose of hospital hierarchies. We know that someone from Pulmonology—not the team that had been in my room—had gone to bat for me. We know that a very young and otherwise unassuming respiratory therapist, distinguished largely by a diamond stud punched though her cheek, also went to bat, fearlessly (we assume) pressuring the higher-ups for the use of CoughAssist.
It’s a pretty simple machine. It puts air into the lungs under positive pressure, sucks air back out under negative pressure. It sits on a little stand, with wheels that let it be rolled around from one patient to the next; it’s got a dull green housing and just a few knobs, and just one dial, a completely simply dial with a needle that flips back and forth between negative and positive pressure. It’s even cheap, one of the least expensive pieces of medical equipment we’ve encountered. But it made a life of difference for me: this seemed to be what made the biggest gain in control of secretions and overcoming of the lung problems that had plagued me for so long, and that had made my condition more threatened than we had realized. What’s been so striking for us is that CoughAssist came to my rescue thanks to the willingness of just a couple of people—incidentally both women--to go to bat for me, something it must not have been easy to do in the often intensely hierarchical environment of a modern hospital.

Brooke was the first patient in Rehab to get CoughAssist. He was told by Gil, the respiratory therapist he liked so much, that might have to help some of the other therapists in understanding how to use it. Indeed, Brooke became enormously exacting with all the new therapists: “Count 1-2-3, then say ‘Take a deep breath,’ then tell me to exhale coughing, then count from one to five while I’m exhaling. Then wait a bit and do it over again.” He seemed to be training most of the therapists. But within a week, we were told, several other patients in Rehab were also getting CoughAssist.
He still gets CoughAssist, four times a day. It’s routine at South Davis.

Friday, August 21, 2009

Loss and Grief

Peggy’s sister Sally is here, and while she mentioned in the blog note posted yesterday that she was a Hospice nurse for years, she didn’t mention what’s even more relevant at the moment, that she’s also a psychologist and a grief counselor. What a family! If you count just a tiny sample of relatives, there are doctors and PAs, computer experts, market researchers, water resource experts, former dessert chefs (the most important specialty?), medical-technology entrepreneurs, pointy-headed academics, and lots more—but sometimes what you really need is a grief counselor.
So it’s a good thing Sally is here. She understands the waves of utter sadness that wash over you, the ways in which that ebbs, then comes again, then ebbs, perhaps a little further along but not much, and she understands that that happens not just to Brooke or to Peggy or to other members of the immediate family, but to everyone who loved or has come to love Brooke.
But there are other losses too, and other griefs. Not long after Brooke’s accident last fall, Bill Spencer died, the owner and chief butcher at the 8th Avenue Meat & Grocery, a local store so rooted in time that it closed down with Bill, and sent all of us who loved shopping there precisely because it hadn’t changed since maybe 1960 off to buy our groceries in the glossy modern American supermarkets. And just a couple of weeks ago there was loss a more startling loss because less expected: Michael Adamson, our hairdresser for almost thirty years, died utterly suddenly of a heart attack: he was only in his 50s, unlike Bill, in his 80s. Michael also left behind a local establishment that was the expression of his irrepressible personality: the 9th Avenue Salon, located needless to say on 9th Avenue, not far from our house. Here too the loss is great not just because you lose a person you’ve loved for decades, but you’ve loved them not only because of the wonderfully idiosyncratic people they were but because their respective establishments magnified the traits of their personalities that you treasured. Bill’s store hadn’t been modernized since the 1960’s (cardboard cutouts of Snap! Crackle! and Pop! were still hanging from the ceiling), and Michael’s beauty parlor resisted all the temptations of commercial beauty-industry glitz. It was a place you could like being in, and a place that didn’t just make your hair look better but made you feel better, not just in a superficial commercial way but more deeply restored. This is the beauty parlor Brenda Cowley’s stage play Shear Luck celebrates—a place where glitz isn’t central, manufactured pseudo-beauty isn’t the goal, and even the old ladies sitting under dryers remain a real force. Michael came a number of times to cut Brooke’s hair while he’s been in the hospital, just out of friendship and love. (For those of you who knew Michael, there’s a memorial service for him tomorrow, Saturday August 22, from 1:00-3:00 at the Salt Lake Acting Company—he often did wigs for SLAC and of course everybody there knew him. Come, the invitation says, wearing what Michael would have wanted you to wear to his funeral: an outrageous wig, sequined pants, drag.) Fortunately the 9th Avenue Salon will remain open, even if Michael himself is gone.

The griefs we’re recognizing have something in common with these other losses. An institution, if you can think of Brooke’s wild outdoors self--hiking, biking, skiing, trekking, snowshoeing, always active and always out of doors—is gone, at least for now, and not likely to fully return. And the institution that he built, if you can think of the teaching he did and the classrooms that he filled with his engaging intellectual personality as a kind of institution too, is also gone for the moment, at least in that he can’t at the moment pace before a class, cover a chalkboard with writing, boom out in his lecturing voice so that a whole class hears. After all, Brooke’s losses are in a sense double: he had just retired and so given up teaching, at least for the most part, and has also lost the use of the body he so actively inhabited.

Part of what Sally brings in her sensitivity to grief is the acknowledgment that loss is real, and that at the same time this loss isn’t complete. Bill Spencer’s 8th Avenue Meat & Grocery is closed, standing empty; and Michael Adamson now only indirectly animates the 9th Avenue Salon. But Brooke is still here—indeed, even in his moments of most intense grief he sometimes says, “but I’m still alive.” And that means, of course, that there’s time to fashion a new person out of the ruins even when grieving for the old one.
Dale Hull, the physician with a C5 spinal cord injury some ten years back who is Brooke’s friend and mentor, says he gave himself a wake when he realized he wouldn’t have his old body fully back again. A wake makes perfect sense, as the expression of grief, but given what Dale has managed to do in the meantime, among other things co-founding the outpatient spinal-cord rehab clinic Neuroworx, it might seem that a christening for his new self is also in order. It think it will be the same with Brooke: we’re coming to that stage of grieving where we can perhaps imagine a wake, but also beginning to see the earliest hints of the emergence of a new person as well. And yet, paradoxically it might seem, everybody also knows it’s the same old Brooke there in the bed, there in the wheelchair, there with the vent sighing lightly in the background, the one we’ve always loved.

PS Come to the service 8/22 for Michael Adamson, if you knew him, and keep that institution alive.

Visit from Sally

I’m Sally, Brooke’s sister-in-law (otherwise known as Peggy’s little sister). I’m here for a visit and am experiencing Salt Lake City’s summer heat for the first time—it’s considerably more tolerable than New York’s!
Brooke was in great spirits when I arrived for lunch bearing a sweet pork salad from Costa Vida. He’d had an “easy” two hour off-the-vent trial and looked devastatingly handsome with a huge smile when I walked in around 12:15. We had a chance to have some talk time before he was put into his chair for the ride down to therapy – he drove the whole way using the joystick with his left hand (WOW!), negotiating the twists and turns in and out of the elevator with nary a mishap. Returning to his room, he was seated (supported in the hoyer sling) on the recumbent bicycle that Peggy had brought in from home. With assistance, he did 4 sets of 20 revolutions each - that’s 80 revolutions, pushing most of the way through each turn with his left leg.
Another breathing trial of two hours in the afternoon was followed by a visit from son Mike before his return home to Seattle. Then came a quick bite of dinner—Thai, from the restaurant where the Philosophy Department had had its annual retreat luncheon-- followed by a two hour interview with Peggy Fletcher Stack and Leah Hogsten from the Tribune. Needless to say, Brooke was sound asleep before Peggy and I left to come home. I know that there are bad days and good days - this was a really good day.
During the years I worked as a Hospice nurse I was privileged to care for many in difficult situations. Brooke’s determination is simply awe inspiring and humbling.

Monday, August 17, 2009

Brooke's first (written) words

The dissociative episode of a couple of days ago passed and hasn’t recurred; Brooke attributes it to not having been eating enough for some days. He was really low; he said he’d even been thinking of starving himself. Then Polly, the anthropologist friend who’d remarked about the similarity of the hot-and-cold feelings to what you experience in malaria, came for dinner that night. She brought grilled chicken, grilled salmon, absolutely wonderful grilled eggplant. Brooke loved it. In fact, there’s no other word for it: he pigged out. And he’s been fine ever since.
And here’s a real sign of progress, thanks to one of his therapists a few days ago: his first written words. You can see his first circles, then his name and mine, with a heart. These are made with his left hand, a real beginning in fine motor control. Brooke had said something a long time ago about recovering capacities the way an infant does; here’s just what a young child would be doing, except that the heart couldn’t mean quite as much to a little kid.

Saturday, August 15, 2009


This morning Brooke had an extreme version of an experience he has had ever since he entered the hospital, especially South Davis, and that is an uncanny sense of unreality, of the unreality of the enclosed world that he lives in, even if it is peopled now by familiar figures who have been caring for him for the past eight and a half months—five and a half here at South Davis. All of you who have had extended stays in the hospital must have experienced something like this, the feeling that you were both there and not there at the same time, or rather the feeling that this couldn’t be happening to me. For long stretches of time, one doesn’t even think that one is in the hospital, one’s mind is constantly churning thoughts. But this morning’s experience was somehow a little different, and more extreme.
What Brooke experienced made him feel like he could almost tip over the edge into insanity. The people around him—the respiratory therapist, his aide, his nurse—did not seem real at all. He even asked the respiratory therapist if she were in fact there or not, and she responded that she was very much there, and that if he wanted to know that, she would offer to let him bite her. During the trach mask trial that followed, he continued to experience this sense of unreality, of near-tipping into a semi-delusional state. He even thought of stopping the trial and calling Peggy to ask her to make an emergency call to his psychiatrist. But somehow he pushed through to an hour and forty minutes, just barely making it before he almost collapsed mentally when it seemed that there was no answer to his summons on the call light.
Gradually the sense that the world outside was a dream, or a nightmare, or whatever, subsided, but while it was happening it was very real and extremely scary. It had followed a very difficult night in which he could not regulate his temperature. He’d awakened around 2:30 in the morning and slept fitfully the rest of the night, feeling both hot and clammy and frozen, as if he had been put in a meat locker. Whatever he did, wherever he had the fans moved, he could not get comfortable, freezing and burning at the same time (as our friend Polly says, like malaria). No doubt this accounted for his strange mental condition in the morning. But whatever the cause, the effect was extremely disturbing.
There are many physically hard things about the effects of this spinal cord injury, but somehow this particular psychological one beat them all in its terror. The brain has a way of defending itself against physical pain, but it has no way of defending itself against mental derangement. In fact, that’s precisely the problem. When the brain becomes deranged, it can’t defend itself against anything, only try to hang on to what physical reality exists outside of it. Many of you know what it’s like to suffer serious physical injury. You detach yourself from it—that’s the brain’s mechanism for keeping some kind of control over pain. But madness is a different story. When your brain starts to dysfuntion, all you can do is cling to some familiar things outside you, and wait—if waiting is the right word--for the mental spasm to pass, hoping that it will pass. Fortunately, Brooke was able to hold onto some sliver of “reality” while he spent two or three hours in that dissociated state. This mental stuff is part of the experience; extreme physical discomfort is only part of it.

Peggy’s note: Brooke has just dictated these paragraphs to me, including describing himself in the third person. But now we’re sitting on the porch at South Davis that looks out over the valley and the Great Salt Lake; we can see Antelope Island in the distance. We’ve described it to you before as a place we’ve often hiked, and where we now sometimes come to watch the sunsets. It’s midafternoon now; there’s a fine hot sun, a bit of a refreshing breeze, and a clear view of the outer world. Brooke is happy that this still exists.
Later in the day, he did another two hours off the vent, and was lucid, self-reflective, and indeed content by evening.

Sunday, August 9, 2009

An Extra Hour's Breathing

Around 11pm tonight, two aides hoyered Brooke from his wheelchair into bed, did a last cleanup and cath, brushed his teeth, put on his hand splints and boots that prevent foot drop, and covered him with the usual sheet. They turned the CD player on to the same Julian Bream recording of Bach that he has listened to practically every night (indeed, all night, since the player is set to repeat) for the past eight months (though he listens to lots of other Bach and other guitar music and other remarkable recordings during the day, he loves this recording for sleeping). He’d already had his evening meds, and several hours earlier he had odysseused the sleeping pill: Take it out of the cupful of pills, he’d said, but since he knew he could always ask for it again later on, he’d added, and throw it away. (In a hospital, pills don’t just get thrown away, and especially not narcotics; there’s paperwork involved when one isn’t taken to ensure that it wasn’t diverted somewhere, but this was cheerfully done.) As he settled back onto the pillow, eyes closing in evident contentment, he murmured happily, I made a breakthrough. I made a breakthrough, barely finishing the second phrase before he was asleep.
It wasn’t just declining the sleeping pill to keep from being fuzzy in the morning. It was the extra breathing. He’d already done a morning session off the vent of 2 hours 10 minutes, then a late afternoon session of another hour and 20 minutes. That’s already a respectable performance. But this evening, perhaps partly because one of the respiratory therapists who is particularly enthusiastic in pushing forward happened to be on duty, Brooke volunteered to do a little more time off the vent. Right after dinner, he said, so we had a wonderful chile verde made by a friend, washed down with a bottle of beer, and a lovely heirloom tomato grown in our own garden, thanks to sets planted by a neighbor, and then brownies baked by other friends earlier that day, and we felt rather loved. Then Brooke settled into the third trach mask of the day—15 minutes, then half an hour, then eventually a whole entire hour. According to the numbers—the end tidals, the SATs, the volumes—he wasn’t even tired and his breathing wasn’t labored a bit, but as you know he did settle onto the pillow and even without the sleeping pill was almost instantly asleep. I made a breakthrough. I made a breakthrough, he said, and, indeed, he had. An extra hour’s breathing. After the hard days in the last couple of weeks, this looked like a year in bliss.

Tuesday, August 4, 2009

Welcome to August

Welcome to August. Brooke passed his fifth month at South Davis two days ago and his eight-and-a-half-month anniversary in four different hospital settings—how time flies when you’re having fun (or even if you’re not). (But we are having some fun, believe it or not, even if it is mixed with really difficult times.)
It’s August—you can see the light changing from Brooke’s room, and he’s already noticing that summer is drawing to a close—it’s still dark when he gets his suppository at 5 am, and almost still dark when he gets bowel care about 6:15. Sometimes friends bring him a latte and the New York Times before his trach mask in the morning, but it’s light by then. We’re just halfway to the equinox. By the end of September we will have passed two equini (we’ve been debating about the correct plural) here at South Davis, and despite a lot of difficulties, we have a lot to celebrate today. Brooke passed over the four-hour mark on breathing—two hours in the morning, two hours and 25 minutes in the afternoon—--the former, watching Bringing Up Baby and the latter with a physical therapist working with his arms and hands for an hour of that time. What’s important is that he was able to do something else besides just breathing, like all the rest of us but a real gain for him. But there was also time for a kind of Buddhist meditation during these trach masks, watching thoughts move through his mind he says like clouds over the ocean, evancescing into nothingness. Bach helps. In fact, it would be difficult to do any of this, Brooke says, without Bach, whose music goes nowhere—simply plays with itself, simply enjoys its own endless play, endless variation, endless ingenious pleasure.
We have some sense of turning the corner after an extended (and depressing) plateau. Brooke’s mentor Dale Hull, himself a valiant spinal cord injury survivor, says that “plateau” is not in his vocabulary and constantly reminds us that recovery of sensation and function can go on well into two years and, albeit more slowly, even longer; he just celebrated the 10th anniversary of his own accident (playing with his kids on a trampoline) by running an underwater marathon, but also says he is still having return even if it is less noticeable to people on the outside.
In addition to the four hour and twenty-five minute trach mask today, Brooke is recovering sensation in his right arm, more or less dead until now, and sensation in the instep of his right foot. He can move his left toe almost at will. Those of you whose bodies are under your perfect control may think this is small potatoes, to be able to move your left toe voluntarily, but here it is huge. So is feeling sensation in your right buttock, even if that sensation is pain. Brooke managed to spend seven and a half hours upright in his wheelchair today, also an accomplishment. To add to all this, the occupational therapist and Brooke are working on a joystick to drive the wheelchair, rather than the current head array; this thanks to the patient work of this wonderful and amusing OT who never stops reminding us of his Basque heritage, not the least of which is conducting therapy sessions in Basque dialect.
So why the plateau? That seems to be part of the natural order of things in spinal cord injury. But there are seemingly related plateaus of the emotions as well—or maybe, in this case, plummetings. A couple of weeks ago we had a visit from one of Peggy’s wonderful cousins, Rainy Janus, who lives in New York state; she brought many little treasures for Brooke, including a digital photo frame onto which she’d loaded many remarkable old family photos and other pictures. While she was here, she and Peggy and Polly, Brooke’s long-term hiking (and skiing) buddy, went hiking in the mountains above Alta, just at the peak of wildflower blooms, and Rain took endless pictures, including one of Polly and Peggy sitting on rocks in the middle of a little stream, where they were all three having lunch. We showed these pictures to Brooke later that day, and he enjoyed them and their artistry, but the one of Polly and Peggy sitting on the rock triggered an emotion so strong it’s been with him since then. This is an incredibly painful emotion, he is able to say now, the emotion of not being in the picture where he normally would have been. Then this weekend another out-of-town visitor came, Phyllis Rose, a writer-now-photographer from New York who was a classmate of Brooke’s at Harvard, and she brought spectacular photographs she’d taken of southern Utah trails we’d hiked on many times. Gorgeous photographs, in huge, enlarged size. These are also trails Brooke can’t expect to ever hike again. But somehow, these two sets of photographs frame another part of what might be called the recovery process: the outbreak of a new and more painful wave of realism about what the future may hold, but at the same time an accepting, if not yet embracing, of this realism as a way of moving on. It seems as though these two sets of photographs are bookends so to speak around this painful plateau, a deeply important stage in going on, and we’re grateful (as odd as this sounds) to both Rainy and Phyllis for showing them to us. Reality is important, after all.

Besides, somebody just reminded us about something else Churchill said in addition to “Never, never, never, never, never give up”: “When you’re going through hell, keep going.”

Concluding warning about plateaus: You can’t really tell when they start, and you can’t really tell where they end. Coming to understand this is part of this, uh, ongoing adventure.

PS. Thanks to those of you who are writing in to this blog—this really means a lot to Brooke as a way of keeping in touch with you--and as a way of still hearing someone say “awesome.”