Tuesday, July 28, 2009

What Churchill said

Months and months ago, somebody sent Brooke a card with Churchill’s famous phrase, “Never, never, never, never, never give up.” It hung on the wall in the previous rehab facility along with a lot of other cards, packed away (not discarded!) when Brooke was moved to South Davis, but it’s one we’ve just started thinking about again. It’s been a difficult time recently, but this morning we worked together on breathing—Brooke as the athlete-in-training, so to speak, and Peggy as the coach. Here’s how it went:
The respiratory therapist—a wonderful, gentle man with an amazingly kind face—comes into the room. Brooke’s in the bed. The aide has been called to make sure Brooke’s body is positioned comfortably in the bed, in preparation for the trach mask trials. L., let’s call the therapist, first uses the CoughAssist machine for three or four minutes to clear out any secretions; then he disconnects the tubes from the vent where they attach to the trach hole in Brooke’s throat, then puts a monitor connector over the hole, then on top of that a clear plastic mask, just three or four inches across and curved so it can’t occlude the hole, connected to another tube that blows warmed, humidified air across the opening to simulate the way air is normally warmed and humidified when you breathe it in through your nose. Brooke asks for music, slack-key guitar. The first few minutes of off-the-vent breathing are always a little difficult for Brooke, in switching from one form to another; L. hovers around the monitor, recording end-tidals, oxygen-saturation levels, volumes. After a while Brooke settles into it, more or less; it isn’t easy, and you can see him pursing his lips, moving his head up and down, breathing rapidly but not very deeply. He can keep this up for quite a while, although it takes real effort. This is good, but not good enough. The therapist says something about breathing more slowly, more deeply, but he’s seen Brooke’s breathing over the months, now—end tidals within the appropriate range for an hour or an hour and a half, volumes in the 100s or 200s—low, but better than they were. This is more of the same. Later, Peggy will realize that L. is disappointed but in an expertly concealed way—there’s still professional encouragement available to the patient and genuine kindness, but the therapist knows that while this is good, it isn’t very good, and it doesn’t seem to be going anywhere much. He would never have used the damning word plateau, but later you know that’s what he must have been thinking.
Still, L. sits patiently in the room with Brooke—not all therapists do so, so this companionship is welcome—charting the numbers from time to time, end-tidals steady, volumes in the 100s, 200s. Peggy’s not usually there for the trach mask trials but for a change she is, leafing through a sheaf of papers she’s working on. An hour passes, and, she will also later realize, she’s getting impatient, bored, and at the same time feels this gnawing disappointment. Not much is happening except that this poor guy in the bed is laboring on and on, working hard but with only okay results. We won’t hear it today, but we haven’t heard that magic word awesome for months.
L. is standing by the bed. Now Peggy is standing by the bed, too, the equally carefully concealed disappointment eating at her too but of course more so, this isn’t just another patient in a bed, this is Brooke. L. says something to Brooke about deeper breaths; pretty soon Peggy is saying the same things to Brooke, “Deeper, slower, deeeeep breaths, deeeeeeep breaths,” and before long these form cadences, as if you were coaching rowers or singers or wind-instrument players, and Brooke catches on—it’s still hard, but he pulls in the air more deeply, more regularly, with greater concentration and effort, end-tidals holding steady but the volumes gaining, now many in the 300’s, and we’re into the second hour. L. and Peggy coach sets of deep breaths, then a lull, then another set, deeper, slower, deeper. Try for a three-second-long inspiration, says L., clearly much more optimistic now, and while that’s hardly possible just yet Brooke tries, and gains, and by the time we’re halfway into the second hour he’s doing lots of 300s, even 400’s--400’s are normal, L. exults. The nurse comes in and caths Brooke right in the middle of this; where he once would have needed complete silence with no interruptions, this time it doesn’t make any difference, and we keep on doing sets. Once or twice I catch that look on his face of complete involvement in pushing one’s body hard, the way he looks when he works out on the rowing machine or is biking uphill, and I know that L. sees it too.
I’ve never heard L. use the word awesome and he doesn’t use it today, but I suspect that he’s thinking it, also expertly concealed.
That was two hours off the vent in the morning. Brooke and L. did another hour and a half in the afternoon, and only stopped because L. had to leave. Thanks, real thanks to whoever sent the Churchill card: never, never, never, never, never give up.

Saturday, July 25, 2009

Being Honest About Tragedy

Some months ago, someone I really trust referred to my situation as “a tragedy.” I remember snapping at him, “no, it’s an opportunity.” We’ve been insisting that the accident and the resulting paralysis is only a tragedy if we make it that way, but now it seems that there’s something honest in what that much-trusted person said, this is a tragedy. It’s hell. We have been so praised for courage, for keeping on going, for heroism, for fortitude, for it seems practically every imaginable virtue that would be relevant in this situation. But sometimes we both know this praise isn’t really deserved. Sure, there’s something in you, something, Brooke says, even trivial stuff like about how a gentlemen ought to be able to keep a stiff upper lip, but when you’re lying there in the middle of the night, he also says, trying to make it through, you’d give anything to have a normal body--which you’ll never have again ever, ever in your life.
Brooke says he tries to think of all the people who’ve been decimated in wars, riddled with shrapnel, double, triple, quadruple amputees, people who are starving, people being tortured in prisons, people who are dying long, drawn-out horrible deaths in hospitals around the world. But it doesn’t help, not because they’re worse off, if they are (how can we compare these things?)—but because we have to admit that these are all tragedies. This isn’t meant to sound self-pitying, just factual. Of course it’s not only a tragedy; there are amazingly positive things too, as we’ve often said, about connectedness, depth, love. But the moments at 3:30 in the morning, when you know you’re not going to go back to sleep, or this morning when I woke up and saw how gray it was outside, when you realize how almost completely paralyzed you still are, these are moments when you’d just like to sleep forever. But then there are moments when you think that if we can just get through this and come out the other side, just get through it, manage to go places, you could really do things for people.
That person I trust, who has his own experience with spinal cord injury, said that it’s like this—you have an active day, then you have to recover for two days. It’s like that physically; it’s like that psychologically too.
What’s a tragedy? Macbeth is a tragedy, King Lear is a tragedy. They’re tragedies because of the moral failings of the hero; there are dead bodies strewn all over the stage, and only mediocre people are left at the end. I can’t claim that my situation is a tragedy of this sort; what happened to me is a terrible misfortune, but not a tragedy in the same sense. In that sense, I guess, I’m lucky. We can at least try to be honest about this.

Friday, July 24, 2009

Reading Between the Lines

Those of you who read between the lines of the entries in this blog about Brooke’s condition, or for that matter observe that there haven’t been many entries at all recently, can probably tell that there’ve been a couple of tough days. We don't mean to keep this from you, but it's hard to write about. His off-the-vent times have been lower, complicated by thick secretions and extreme tiredness; with this goes a darkening mood, empty-sounding assertions about not giving up, even the intimation I've feared might happen some day about not wanting to go on. He hasn’t wanted to see people very much. Then a day or so ago a representative from one of the van-modification companies brought a shiny, fully modified Dodge to the hospital to try, but we discovered that Brooke is just plain too tall sitting in his wheelchair to fit into this vehicle; he can’t bend his neck, since that’s where his spine was fused after the accident, and so can’t drive his chair up the ramp through the door opening, and even if he gets into the van he won’t fit forward in space for the passenger’s seat, but would have to ride in the back, like cargo. And it’s not just this Dodge that’s the problem; apparently all minivans have these too-small dimensions, and the interior room of full-size vans is even smaller. Thus even the possibility of easy transportation seemed dashed. Meanwhile breathing was worse, there wasn’t any new return, and he seemed unusually vulnerable. Yesterday was extraordinarily black, and he sent away someone he has really treasured. He quit the afternoon trach mask trial after something like 5 minutes.

But this morning was much, much brighter; the secretion problem had mostly resolved and a reduction in the amount of spasm-controlling medication he’d been taking seems to be paying off. Indeed he said something about how today was as good as yesterday was bad. There's a little new movement in his right foot and especially in the left one. And in the afternoon trach mask trial, he stayed off the vent for two hours and forty minutes—and even said afterwards, when he’s usually completely wiped out, that he felt good.

The trouble with reading between the lines in this blog is that it’s a little like astronomers analyzing patterns from stars that are thousands of light years away. You can tell what’s going on, more or less, if you look carefully between the lines, but you can’t tell what’s going on right now, when you’re doing it. Even if this news about the 2 hr 40 min trach mask in the afternoon is less than six hours old as I actually post it, a little after midnight, you can’t tell what’s happening right now.
But it could be even better: peaceful sleeping and a new sense of calm. There's not much way to talk about who deserves what with this kind of devastating accident, but you can talk about a ful night's sleep: it's hard to get, but I think he deserves it.


Thursday, July 23, 2009

No news

Hi all, Sara here. We apologize for the lack of blog entries lately - I have been here with my 2 kids (Max, 7 and Sydney, 5) for almost 2 weeks now and as you can imagine, things have been crazy busy with all of us here. Peggy’s cousin Lorraine was here, as well as my brother Mike. Between visits to the hospital for long dinners and keeping everyone entertained during the day there has been little time to sit and write an adequate blog entry, so this will have to do for now. No real news with Brooke - he continues to progress at a slow, but somewhat steady pace. There are good days and bad days, but the good seem to outweigh the bad. His eyes light up when we come into the room, so we know that he is enjoying our visits. Sorry for the lack of real news, but Mom will get back to blogging soon. For now, just know that no news just means busy times.

Thursday, July 9, 2009

On Failure

The word failure is never used at South Davis, as far as we can see, at least within the earshot of patients. But it happens just the same. After last Saturday’s enormous success in letting breathing happen by itself, Sunday brought a return of spasms, discomfort, poor breathing, and general discouragement. And failure. Brooke did one trach mask trial of just an hour or so, another that didn’t happen at all.

What causes failure? Too much trying, too many efforts, too much trying to reproduce what has happened before. But as many of you know, this is characteristic of many creative endeavors, musical composition (as Brooke was just discussing with some friends who came to dinner, bringing Chicken with Forty Cloves of Garlic), writing of all sorts, and even sexual intimacy. It’s impossible to reproduce the kind of spontaneity that characterizes those moments in which everything seems to come together without even needing to think about it. The great moments seem to just happen when you least expect them; then you try and try to reproduce them but you almost always fall short. Well, that’s what happened to me in the two days following the ecstactic experiences of the Fourth of July, failure—even though it’s connected with what’s most prized, really working hard at things. Maybe there’s a reason they don’t use that word around here; it’s not so much failure as part of a very, very familiar and even necessary pattern.

After all, failure is often followed by success. Lo and behold, two days after that memorable Fourth, after a terrible night’s sleep and no expectations of anything happening at all, I was able—even half asleep most of the time--to breathe off the vent for almost three hours straight. Now that isn’t failure at all, but it will risk producing what seems like failure as soon as I start trying to do it again.


Sunday, July 5, 2009

(Mis)Naming Names and Seeing Into the Future

There’s a reason why I try not to mention people’s names on this blog unless I have their specific consent—the usual privacy reason, of course. But there’s an additional reason—I might get it wrong. In the Biking Over Boulder Mountain account a couple of entries ago, it isn’t Steve Parker, Kirtly’s brother, who was biking with Brooke, but Steve Boyer, a world class mountaineer and international refugee doc—of course I knew that, since I’d driven over Boulder with them while they biked, lounged in the hot tub with them afterward at the Boulder Mountain Lodge—a welcome reward for their efforts—and then had a wonderful dinner together with them. Silly me.

In pointing out this mistake, Kirtly said, how remarkable how close that trip was to a year ago. Yes, it’s just a year. Who could have known what lay ahead for Brooke? The Existentialists along with various other philosophers have insisted that we should always live our lives as if something like this could happen at any moment--which to some of us, it does. And could to any of us in the future. One of the extraordinary things about hanging around in rehab facilities is how many of the patients here are caught so to speak in mid-life—driving their cars somewhere, riding their bikes or their motorcycles just for fun, or like an old college friend of mine climbing down a ladder from the loft in somebody’s summer cabin, or like Brooke’s spinal-cord mentor, jumping on a trampoline with your kids. Now they’re all lumped into a common category—the disabled—but underneath, they’re all regular people who were just living their regular lives.
Maybe that’s part of what explains the extraordinary sense of community I see among people with spinal cord injuries, something Brooke deeply experiences and is amazingly grateful for, and I admire from nearby but still outside.


Saturday, July 4, 2009

Happy Fourth of July

Happy Fourth of July to everybody out there. Every year our next-door neighbor around the corner, Mike Evertsen, our favorite real estate agent, and his partner Mark, plant little American flags in the lawns outside all the houses in our neighborhood. For the first time in seven years, Peggy says, I haven’t run out to uproot the thing; I’ve been delighted to see it there. Brooke, whose whole early troubles with pneumonia had come from a cold he caught campaigning for Obama a couple of weeks before the accident, is celebrating these little flags too.

But there’s something less political, more personal to celebrate today as well: a new milestone in the breathing that Brooke’s been working on so hard for so long. He’s been at South Davis undergoing vent-weaning for exactly four months and one day, and this morning, for the first time, he reports, he was able to breathe with his lungs. His lungs! They’re breathing on their own, he says, and his chest muscles are moving up and down, automatically! All he has to do is get the process started early in his trach mask trial, he says, when his breathing is switched from the vent that pushes air in, to vent-free breathing where the diaphragm creates a vacuum that sucks air in, and then his lungs and muscles take over, by themselves.
Just like everybody else. That’s the point.

A word from Brooke about the hard and often frustrating work of the past four months. As those of you who’ve been keeping up with this blog know, this has never been particularly easy for me except on those rare occasions when there have been significant increases in the length of time I’ve been able to stay off the vent. These have been followed by plateaus that have lasted up to several weeks, plateaus that are often discouraging and intensely frustrating. I’ve tried often without success to push through to longer lengths of time, but the amount of time I can go without the vent has hovered around an hour and a half, maybe an hour and three quarters, not much more. The therapists have said awesome less frequently, and there’s been a sense of having stalled. Of course, I assume my muscles have been getting stronger without my really knowing it, but it’s still been the same picture: like practicing for a race. You work hard for days, unable to outdo the time that you set for yourself.
And then suddenly, because of all the work you’ve done, you spurt ahead.

A week or so ago, Brooke had the extraordinary experience of actually feeling his breath enter his lower lungs. This was a physical feeling as well as a mental one, both at the same time. It was aided in part by something he’d seen months ago, back when he was in Rehab at the University hospital: they’d used a bronchoscope to detect and try to suck out secretions from the lungs. We described it on the blog some months ago, how you can see on the monitor the branching tubes of the bronchii, and it was this that Brooke could re-envision and actually feel as he was breathing a week ago. This past week had its small triumphs as well as periods of frustration, but what the respiratory therapist said on the day that Brooke could feel air coming into his lungs stuck in his mind—he had been puffing out his cheeks during the breathing sessions for the past one or two months, and the therapist had said, you’re going to have to stop that. You’re retaining too much CO2; you’re breathing with your head, and not allowing the breathing to take place naturally, on its own. Brooke was bewildered by this and not a little annoyed, since he hadn’t realize that this method of puffing out his cheeks was counterproductive. But the next day he decided to try the therapist’s new method of just breathing without puffing out his cheeks, and it seemed to work with no discernable problems.

Early on in the vent-weaning process, the only way Brooke could breathe at all off the vent was to utilize his neck and upper shoulder muscles—these were of course unaffected by the injury—and then later on he’d rock his head back and forth as he tried to breathe. Then he took up puffing out his cheeks, holding the air inside, as he tried to get into a rhythm in breathing. He worked and worked at breathing, having only his accessory muscles to use, and it required complete silence and total concentration, with only Julian Bream playing Bach preludes on the guitar in the background. Of course, all these were necessary stages in getting to where Brooke has just arrived in the past 24 hours; neck and shoulder hunching, headrocking, cheek-puffing, and all the rest of it has been necessary because he couldn’t do anything else to make himself breathe until just now.
Perhaps another factor in this process of vent-weaning has been Brooke’s experience in doing Vipassana meditation practice. As some of you may know, he says, introductory Vipassana courses take place over a ten-day period, characterized by total silence, starting meditation at 4:30 in the morning and meditating in a sitting position for up to nine hours a day, and having a last full meal at 11:00 in the morning. Brooke has done five of these courses—the first in about 1982, and the most recent a couple of years ago. He says that a ten-day period like this can be excruciating, often all the way through to the sixth day or so: it’s uncomfortable, it’s anxiety-producing, and the last minutes of an hour-long sit are almost unendurable at first. Slowly, however, the body learns patience with itself, learns how to relax and perceive pain not as pain, but as discrete sensations. Vipassana emphasizes a kind of mental body-scanning, where you begin by becoming aware of what the breath feels like as it flows out beneath your nose; then you mentally scan the way the whole rest of your body feels. This body-scanning can produce a feeling of rather extraordinary liberation from one’s early fears and anxieties. By the end of a ten-day course, one doesn’t want it to be over; one wants to build on what one has achieved over the ten past days. Training in this technique has helped Brooke enormously, he says; he can push himself past limits he could not have imagined at first that he could ever surpass.
Trekking has helped as well. The last trek Brooke took was a 21-day trek in the Peruvian Andes. He’d started out the trek as sick as a dog, he says, suffering from diarrhea and then a very bad cold; then he had to face along with his trek-mates 17,000-foot passes and amazingly steep descents into valleys where they camped, and then further ascents for 21 days, with only one short break in between the first and second halves of the trek. This helped his mental and physical endurance too, he says, and has played a major role in his being able to go through this even more demanding trial happening right now here at South Davis, or to put it another way, this more demanding adventure.
This adventure is different though, even if it is both physically and mentally demanding: it means learning how not to breathe with your head, but allowing your body to do your breathing for you. It must sound amazingly simply to all of you out there; to Brooke, it’s been the hardest thing in the world.

Last night, in a moment of discouragement Brooke said, “Maybe I’m too old for this.” Today the same, very experienced respiratory therapist who was there last night says that when she heard this, she knew a breakthrough was just about to occur—awesome, she said, that’s always the way it is. Perhaps she knows that plateaus are only temporary; to us, they’re all too real.

Friday, July 3, 2009

Biking Over Boulder Mountain

Last summer, in the middle of June, Brooke and three friends biked over Boulder Mountain, altitude almost 10,000 feet. He’d been training for this adventure for about a month, doing hill climbs and long rides, but of course nothing compared with the reality of the actual mountain. He was with his frequent biking companion, Chris Jones, as well as Steve Parker and his wife Priscilla, also serious bikers; Kirtly Jones was driving the swag wagon and Peggy had Brooke’s car (as the kids always called it), the Zurdmobile, since she'd have to return earlier.
We had the swag wagon, Kirtly’s four-wheel-drive, loaded with cool drinks and lunches and huge amounts of high-energy snacks. We followed the bikers up from Chris and Kirtly’s cabin in Torrey, at about 7,500 feet, first out onto the Teasdale road, heading east, already a bit of a climb, then south onto the Boulder Mountain road, climbing, climbing, then descending slightly, then climbing again for a longer stretch, losing a bit of altitude as the road in the midranges of this mountain curve around its flanks, then climbing again for a longer, much longer stretch. It’s midsummer, though fortunately a temperate day, but the sun is bearing down and it’s getting warmer. Chris and Steve and Priscilla are stronger bikers, usually out in front by a half-mile or so, though Chris would loop back from time to time to see how Brooke was doing, and would always find him still pedaling resolutely along on his thirty-year-old bike, about three times as heavy as the newer, fancier bikes. The bikers stop at the first overlook; the cars pull in too, one an air-conditioned SUV with music on the CD player and comfort-adjustable seats. We open up the cooler with thr cold drinks and energy snacks. We all gaze out at the view: a hundred miles it seems of open desert and canyon country, with Factory Butte standing out slate-blue against the redrock background a bit to the northeast; Bowns reservoir a brilliant blue down below; and off in the distance, the Henry Mountains, the last place in the continental United States to be mapped, and still so remote that there’s herd of three hundred bison who inhabit it.
Then it’s back on the bikes. The four ride out together and it’s climb again, climb again, climb more as the road leads up over the flank of the mountain, aspens and evergreens, rock outcroppings and then more patches of aspen and stands of evergreen. Another several miles and we break again, stopping the cars at the mouth of a trail road to eat lunch, and somehow taking a hike—all of us, the four bikers who’ve already ridden three-quarters of the way up this mountain and are now adding another five miles of walking to their efforts, and the two in the cars. It’s a lovely little hike we’ve done many times, gently uphill among the aspens and the evergreens, up a rough dirt road to the stream, and we spend some time among the grasses and the flowers scoping out exactly how the lateral moraines have formed this delicious little valley.
Then it’s back on the bikes again, now more resolutely uphill; it’s now midafternoon and hotter, steeper, the road climbs now relentlessly, and from the inside of the cars Kirtly and I can each see the bikers approaching the top, the crest of the road before it begins its twenty-mile descent into the town of Boulder, where we’d all have dinner and spend the night before going off to explore more of the redrock country. We can see them reaching the crest of the road, Chris and Steve and Priscilla are still in the lead but Brooke not far behind, and my car passes alongside him just as he reaches the altitude marker at the summit. I can still see that extraordinary look on his face of tortured endurance and complete triumph, as I will always remember, and I honked my horn for him gently, as he still remembers.

Today, just a tiny bit more than a year later, Chris and Kirtly and Steve and Priscilla and I are all with Brooke in his hospital, just a happy coincidence. It’s Brooke’s physical therapy session. Brooke is suspended in a blue sling from the lift device known as a hoyer, being lowered down onto the seat of a recumbent stationary bicycle, still hooked to the vent but levered upright onto the seat of the bicycle and held in place by the sling. The physical therapist and his aide are slipping Brooke’s feet into a pair of green Crocs that, coincidentally, had been a present from Kirtly some years ago, and the PT and the aide are strapping elastic Theraband around the Crocs to hold Brooke’s feet onto the pedals. Brooke’s only been on this bike once before, a week or so ago, but then without much result. There’s some tension in the air now; there are an awful lot of people in the room; there’s what seems like a lot of pressure for him to perform. The therapist holds one foot, and at the same time holds the knee to keep it from falling down to the side; the aide and Steve work with the other foot to keep the Croc from hitting the floor. They guide his feet around on the bike for a couple of revolutions, and then the therapist tells Brooke to push with his left leg, by himself. It is slow, slow, but he manages to push his leg down and the pedal moves forward, around, and then the other leg, less strong but also able to push forward, does so, and all of us in the room breathe a sigh not just of relief but excitement for these first few very slow, terribly difficult but brand new functionings of Brooke’s legs. He still can’t make a complete revolution of the pedals on his own, but it’s a beginning.
"It’s as hard as biking over Boulder Mountain," someone says. Brooke agrees, with something akin to the same look on his face as when I’d seen him at the summit.