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?