A major earthquake is usually followed by a number of aftershocks. Two nights ago, while Peggy was at a conference on end-of-life issues at Cold Spring Harbor having dinner with, among others, James Watson, who still remembers Brooke from many years ago, two friends of Brooke’s were at “dinner” with him in his room at South Davis. Of course, because he hasn’t yet passed the swallow test to determine whether he can eat without aspirating, he isn’t allowed any real food or drink yet. But he is supposed to practice swallowing, to retrain the throat muscles that grow flaccid when they weren’t being used all the time he was in the hospital for pneumonia and the immediate aftershocks of dehydration and excessive use of painkillers that followed.
The two friends and Brooke devised a game: they staged an imaginary meal, designed to let Brooke practice his swallowing exercises. There were supposed to be 82 courses: appetizers, cheeses, wines between courses, red snapper Veracruz style, root vegetables, interspersed with different wines and occasional champagnes, with of course sorbets to cleanse the palate between each course; there was a game course with venison; roast lamb with sage and rosemary, delicacies under glass, and much, much more.
Suddenly, in the middle of this repast, an alarm went off: it turns out that the tube that travels in through Brooke’s right nostril to bring in the liquid diet had gotten plugged up because one of the medication tablets hadn’t been crushed sufficiently. The nurse made various attempts to unplug the line; so did the charge nurse, and then a medic—after two hours of trying, using a wire probe and various solvents, including Coca-Cola (something the oldtimers on the nursing staff swear by), they finally got the plugged tube unplugged. This ended about 10:00 at night, while the two friends were loyally watching. But it plugged up again, and two days later that tube was removed and another placed in through the other nostril; this requires placing the tube with a stiff wire threaded through it, which then serves as the contrast for an x-ray required to be sure the tube leads appropriately to the stomach. It’s not a comfortable process at all, to say the very least.
When Peggy arrived back from her conference—a nonstop trip from JFK straight to the hospital—Brooke was in huge distress, sweating profusely, in extreme discomfort, still saddled with the vent, waiting for the results of the confirmatory x-ray. After a bit of prodding to get the results, showing that the tube was indeed positioned correctly, we could relax a bit, and Brooke managed to enjoy the afternoon with another friend, one describing himself as a three-ring circus of potential diversion for Brooke.
But as we sit together in the evening, what’s apparent is a sense of frustration and perhaps even anger with at least some of modern medicine. True, modern medicine made it possible for Brooke to survive the pneumonia, and certainly would not have otherwise; surviving is the main thing. That was the earthquake, the pneumonia treatments; but it’s the aftershocks that irritate. The fancy hospital bed that, however, you couldn’t really sit up in, and so found yourself lying in the same abjectly supine position for a week; the excessive dehydration, just one of various ways of trying to take water off the lung; the introduction of yet another pain drug in order to try to achieve some relief, but at the same time relying on a collection of older ones as well; and above all, perhaps, the absence of a sense that there was some one medical overseer for all this activity, rather than just a series of interns and residents and attendings who change from one day to another in a modern hospital setting. It’s not that there isn’t someone keeping track of what’s going on, but that the patient doesn’t really see this. But what’s really the subject of frustration and anger is the difficulty of comprehending what’s going on, and what to consent to and what not, where to cooperate and where to complain, when one is already cognitively impaired by the very treatment being given. This isn’t of course just a problem for Brooke or for spinal cord care; it’s a ubiquitous problem in much of modern medicine. Brooke says he doesn’t think the effects of those pain medications have fully worn off quite yet, but he is far, far more alert and intellectually robust than he was just a handful of days ago. And this is partly what allows him to be mad.