Sunday, September 26, 2010

Returning to Teaching


            Last Monday, Brooke taught the first class he has given in two years, since the week before his accident.   It’s on Thoreau’s Walden, a book he says that if read closely and attentively enough, can completely revise your ways of thinking, not just in the chapters “Economy,”  “Where I Lived and What I Lived For,” and “Reading” that he’s covering tomorrow, but throughout.  While his former English-Department colleagues might quibble, Brooke says it’s one of the best examples of the sublime in literature anywhere.

Teaching Walden  is a double milestone.  He’s teaching the class, and he’s coming home for the day (and the night) to do it.  He’ll do that every Monday for six weeks, or until he’s ready to come home for good.  We haven’t been ready to brag about how well the first class went, but perhaps after tomorrow’s session we’ll be able to tell you some of the details.  It is a milestone, a big one.



Saturday, September 18, 2010

Hope Feeds Life: On Time and Expectation

As the prospect of Brooke’s returning home comes closer, we’ve been reflecting back on some of the ironies of our experience of time and expectation over the past year and ten months. First of all, it should be obvious that we never expected Brooke to be in any hospital facility for so long, although we know there are people who spend much longer, sometimes many, many years or their whole lives in places like this. (We see some of them here.) Perhaps their experience is similar to our own, never really expecting what turns out to be the case.
When Brooke began to emerge from the spinal storm that normally occurs after spinal cord injury, when there’s no feeling and no motion below the level of the injury at all for five weeks or so, we had hopes of fuller recovery as some sensation and some motion began to return. Brooke remembers rumors of the doctors getting together and saying, he’ll breathe off the vent. He remembers having a roommate who could operate a manual wheelchair and was able to go to the bathroom by himself, and thinking, that’ll be me in a while. He remembers thinking that he’d only need about four packages of Gillette Mach 3 razor blades to get through the whole thing. He remembers Dale Hull walking into the room, on a cane yes, but walking; Brooke remembers thinking if I could just will my legs to do this I could, all you have to do is think about walking, imagine walking, and you’ll be able to walk. I imagined our favorite local hiking trail, he says, the one just four minutes from our house, up above Terrace Hills along the Shoreline Trail—I imagined it step by step, I imagined using my hiking poles, one after the other, I imagined the various turns in the trail, the views out over the valley, the scrub oak, but it would only last two minutes or so, and nothing happened with my legs.
And we thought it would take just a short time to get home. We had a discharge date in about two months. That’s what motivated working so hard. Then we discovered that “discharge” didn’t mean discharge to home; it meant discharge to a skilled nursing facility, South Davis. Nobody ever disabused us of any of the false beliefs we had, even though they were perfectly obvious to all. We had no idea of what was coming.
And everything was slower than we ever imagined, and more punctuated with setbacks. And there were institutional slownesses to reckon with too: we heard about the diaphragmatic pacer three-quarters of a year before it was finally implanted; we heard about the FES bike ten months ahead of its arrival at South Davis, and so on. Hope—hope of recovery—kept feeding life, it kept me going, Brooke says; I kept thinking, if only I work a little harder I’ll be out of here. That wasn’t bad, he says; that’s the positive thing about hope, even if it turned out not to be entirely or even nearly true.

Among the other things Brooke remembers from those early spinal-storm days and afterwards was thinking that he’d be able to teach his OSHER course starting in early April. That’s two Aprils ago now.
Now, this coming week, he’s actually planning to do it, a six-week course scheduled for Monday afternoons that will meet at our house with a maximum of ten students. Even that will be an enormous challenge, not only a respiratory challenge—he’s been working with the speech therapist to be able to read Thoreau out loud for twenty minutes in a row—but also a mental challenge: because he can’t pick up a book and leaf through it, he has virtually memorized the entire thing by having friends read it and listened to tapes.

Like many, maybe most teachers and professors, we’ve always had teaching-anxiety dreams. They’re those dreams about forgetting what room your class is in; about taking the wrong text; about not having read the material for the class; about not even remembering what the course is about at all. You wake up from those dreams in a cold sweat, and sometimes even laugh a little bit afterwards, so predictable and familiar they are.
This time, though, Brooke says he hasn’t had any teaching-anxiety dreams. Perhaps the truth is that there’vew been so many other anxieties, so many delayed expectations, so much astonishing elongation of time, that garden-variety teaching-anxiety dreams just don’t have any place.

“Informed consent” is supposed to be the name of the game in contemporary medicine, where the patient is entitled to choose whether or not to accept various medications, procedures, surgeries, whatever. The patient is assumed to be fully autonomous and to have full information about the risks and benefits of whatever treatment is proposed. This principle of informed consent is observed in many ways. For instance, just last night Brooke was refusing to take a specific drug at a specific time: he’d changed his schedule on his own to Lunesta, the sleeping pill first, then the anti-anxiety drug Klonapin second, though he’d been taking Klonapin first, then Lunesta for some time. Now he wasn’t sleeping well. Peggy thought the Klonapin should be earlier, the Lunesta later. She said so; Brooke insisted no. The nurse listened entirely to Brooke express his refusal and didn’t argue, didn’t try to persuade him, but when Peggy explained her reasons for reversing the order of the two drugs, Brooke eventually smiled and said, that makes sense. Then the nurse smiled too; clearly she’d also been thinking that the reversed order made better sense, but wasn’t about to try to go against his expressed wishes in any way.
But that was just about the order of pill-taking. That isn’t really a big deal; it’s just about how to get a little more calm and a little more sleep than you’ve sometimes been getting.

But the biggest deal, namely what lies ahead in general, isn’t something that’s been a matter of informed consent at all. We haven’t had any realistic idea of what lay ahead, beyond a few people sagely muttering it’s a long, long road, and no occasion for making a choice about whether to venture out on that road at all. How you’d make that choice it’s impossible to know, perhaps, but there’s never any sense of a choice to begin with.

Part of the problem has to do with what sorts of information you get and where you get it, and how reliable it is. For example, there was the mysterious episode when Brooke was still in inpatient rehab of the two doctors who appeared early in the morning, when it was still dark, in February—two Februarys ago. All Brooke could see was their shadows in the dimness of the early dawn light. They were the same height and build, he remembers, like Masters swimmers. They introduced themselves as Dr. so-and-so and Dr. such-and-such (I thought of them as Rosenkrantz and Guildenstern, Brooke says). After some initial small talk and listening to me with stethoscopes, they told me I would be off the vent in no time at all, and they described the stages of vent weaning that would occur at South Davis as if the whole process were as easy as rolling off a log. Of course this gave me enormous hope. These two doctors appeared two mornings in a row, and said almost exactly the same things those two mornings in a row.
Later Brooke mentioned this strange episode to his own doctor and said that all this seemed like something out of a dream, the two doctors like dream figures. His own doctor said no, they were real doctors, but he made no comment about what had been shoveled into Brooke’s head—the idea that he could just get off the vent in no time and with no effort.

But, of course, what they said became an ingredient in the information that is part of “informed consent.” So did a lot of other rubbish. What about the seeming optimism of these doctors? Either they didn’t know anything, Brooke says, or they were playing a trick on me. Most probably, they didn’t know anything or know anything much about my particular case, but in either case they had no business talking. My own doctor didn’t bat an eyelash when I told him about; he should have been furious, but in fact only added to the deception by failing to correct it. On the other hand, not knowing what an enormous and difficult length of time it would take to wean from the vent is precisely why I pushed myself so hard at South Davis. I thought, by June I’ll be free. By August I’ll be free. I still worked, even when I knew the pacer would be going in and render much of this effort superfluous, or so it seems. I’m progressing through the stages those two doctors portrayed for me, but nothing about it has been quick or easy.
So here’s the dilemma, which every doctor recognizes: you don’t want to tell your patients how long it’s going to take or how hard it’s going to be, and you can’t tell them the truth; hope feeds life. On the other hand, we function in a culture in which the prevailing myth, legally reinforced, is one of informed consent. As far as I can see, it’s consent about the little stuff, but not the really biggest things. Would I have given up altogether, or kept going,  if I’d known the truth?

Sunday, September 12, 2010

TrailRider Expeditions

Perhaps you remember our efforts with some engineering friends to develop a CarryChair last year, something that could get Brooke outside, into the mountains he’s always loved. That project got interrupted by winter, and in the meantime we discovered something developed by the Canadian organization British Columbia Mobility Opportunities Society, a marvelous construction called the TrailRider, designed specifically for people with conditions like Brooke’s. It was designed we understand by the former major of Vancouver, himself a quadriplegic; you can read the history and, better still, see astonishing pictures of extreme treks at Basically, it’s conveyance that holds a person in a semi-reclining position, balanced over one thick wheel and pulled/pushed by two strong people, known as sherpas, front and back. It can travel over fairly steep mountain trails with rocks, roots, and other obstacles in the way. The website tells us that the TrailRider has taken people to the summit of Mt. Kilimanjaro and to the base camp at Mt. Everest. Our ambitions have been a little less heroic, at least at this point—though they seem heroic to us.

Our first excursion took place a couple of months ago: we went up and down the corridors inside South Davis. Then the TrailRider sat in the corner for another couple of months, while Brooke was having his hard summer of various setbacks. Then two weeks ago we went around the parking lot at South Davis—this time, we were out of doors. Then last week we traveled in the van to a park in the mountainside canyons here in Bountiful, Mueller Park, about ten minutes from the hospital. Last week’s expedition involved getting out of the van, into the TrailRider, then traveling uphill through some paved parking lots and onto an old dirt road, for about a quarter of a mile. It was a huge success, capped by an elegant picnic with smoked salmon, tomatoes with mozzarella, spectacular cheese sent directly from France by a New York friend of Brooke’s, and a special beer. You’ll see pictures attached from both these trips, with more to come. And then today, the third expedition, involved traveling up the main hiking trail at Mueller Park—Shaun Wheeler as the sherpa in the front, Ed Fisher as the sherpa in the back, with Julia carrying the portable suction kit and the stethoscope and the SAT monitor, Michelle Fisher with food and the leash for their very active dog, and Peggy surveying this expedition with extraordinary satisfaction. Up the trail, through the evergreens, into scrub oak and aspens with just the first early blush of fall color—we went almost a mile up to a viewpoint, where you can see out east further up the canyon, into the Sessions mountains, or west out over the entire plain with the Salt Lake and Antelope Island in the distance. Brooke admired the views and the foliage and the open sky, but even more the three raptors soaring in the currents above the canyon.

Later that evening, after this wonderful trip and the visit of an extraordinary new physical therapist who was able to get him to sit upright on the edge of the bed, unsupported for two or three long, long seconds, he said something that would be ordinary for anyone else, but remarkable for him. I feel so energized.

Meanwhile, Brooke is getting ready to teach his first class on Walden, beginning next week. We’re planning to couple this with an overnight home visit, and hope that each week the home visits will get longer—first one night, then the following week two nights, and so on. You can see where we hope we’re going.

Thursday, September 9, 2010

PS to The Dinner Party

I wrote the Dinner Party blog myself, says Peggy—as I realized later. I’d asked Jane if we could post something about the dinner we’d just had together, and then as Brooke was having his bedtime nursing cares I wrote most of the text (this isn’t the way we usually work; we usually do it more closely together); and then I ran it past Brooke.  He said uh-huh.   I thought I’d run it past Brooke, that is, and but I now realize Brooke was mostly asleep when I read it too him just before I posted it.  

We’ve just reread it, together, one night later.  Brooke says he doesn’t like the ending—it makes too light of Roger’s problems.   Brooke says, “I used to say about my own situation, ‘this is going to be such a journey’ and ‘I look at this as an opportunity,’ stuff like that—but I don’t think I knew what I was talking about.   I regret saying those things.  There’s something about the ending of the blog about our dinner party with Jane and Roger that disturbs me—it seems to wrap it up with a rhetorical bow, just like some of my earlier attempts to buoy myself.  The Dinner Party blog entry ends too neatly, given what Roger has got to go through.    I don’t think you can compare back-country ski adventures to the “adventure” Roger is on—it just trivializes it.  I don’t think you were aware of Roger watching all the things I have to go through, the kind of pain I was in while you and Jane were talking last night, and Roger was just watching, watching, his eyes bugging out as if to say ‘I can’t believe all the crap you have to go through with all that suctioning and cathing and stuff.’ I want to demure from that account of our dinner.  It gives me trouble.  It’s a false note.”

  In fact, some of the neat endings to various entries in this blog are a problem for me, Brooke goes on to say. There’s such an irony here in this account of our dinner. The hiking and skiing adventures we went on together took a great deal of physical and emotional stamina.  But now we in our different ways are both faced with a trial that will take a thousand times the kind of stamina and emotional sanity and physical strength than what we did when we skied together.   I keep saying to myself, this is a hundred treks.  This is a hundred marathons.  Even the FES bike, the new functional electrical stimulation bike that’s used to shock the muscles in my legs into riding in a bicycle pattern, is harder than almost any exercise I’ve ever done.  The reason we come together, you and me and Jane and Roger, is because we’re fortifying each other, not just adventuring out in the wilderness when we choose.

Would you call Huntington’s disease an adventure? No, the word doesn’t work.  It’s the contrast between our youthful selves and the situations we never knew we’d be in, facing challenges beyond petty little ski tours.  How could we have known back then that we’d be in this room, going through what we’ve been going through and are about to go through?  That’s the ultimate irony, that we knew so little then, we were such innocents, we really did have adventures, and now we have to struggle to maintain enough realism to recognize that that word doesn’t work anymore, even as we all also struggle to try to make the best of what’s going on.  These adventures are adventures in a sense, and they’re what Roger and Brooke smiled to each other about, but they aren’t anything like the ones we used to have. 


Tuesday, September 7, 2010

The Dinner Party

Our friends R. and J. were here at South Davis for dinner again, dinner such at it is. We wrote about them some time ago. Roger has ALS. The first time they came for dinner, Roger looked at Brooke, lying in the bed, on the ventilator, motionless, and said, “That’s where I’ll be in two or three years. If I’m lucky.”
Roger’s physical being is deteriorating, though his organic-chemist brain remains completely sharp. He’s the kind of guy who, when describing the problems that ALS causes with balance, doesn’t talk about trying to stand up so that his center of gravity is poised just so, but about his “center of mass.” He’s been engaged in furious research about ALS and has developed genuinely radical new theories of the etiology of ALS, publishing various papers, even as the disease takes his body out from underneath him, so to speak.
So we had dinner. A dinner party, sort of. Brooke is lying in the bed, but telling Roger that he’s been feeling pretty good and about the progress he’s made in wearing the trach cap for many hours a day, breathing just the way an ordinary person does, in and out through the nose and mouth. The cap makes the trach irrelevant, and makes it more likely that even this last small-size trach can be removed some day. Brooke’s trajectory is slowly upward; Roger’s is slowly downward, and they’ll cross at some future point, maybe in a couple of months, maybe longer, no one exactly knows what’s in store for Brooke or for Roger.
Roger and Brooke had done a lot of hiking many years ago, including the usual hair-raising mountain escapades.
“We’re brothers in adventure again,” Roger says to Brooke. The four of us, Roger, Jane, Brooke, and Peggy, discuss whether it would be more accurate to say, "We’re brothers in adversity." We talk about what it’s like to frame something as an adventure or as a disaster, even if it means death for one and permanent disability for the other. Even though eventual paralysis will take away even his facial muscles, Roger still has this wonderful, infectious smile. Brooke smiles his own wonderful smile too. They agree: “We’re brothers in adventure again.”