White-Knuckle Life

A day or so ago, after the blog about Brooke’s managing to grasp the talcum-powder container and hold it off the table for 15 seconds, I got an e-mail from a friend saying, “you must be thrilled about the grasping.” It arrived at about midnight, perhaps accounting for my bleak mood, and I found myself answering, “Yes, I am thrilled about the grasping. But of course in addition to news about grasping you didn't see news about gasping, when the trach comes accidentally unfastened (happens more often than you'd ever want to believe), or about how right in the middle of happily watching Obama tonight he could go from beamingly contented into a respiratory crisis. I mean, real crisis. This is not a life for wimps. But things were okay when I left the hospital an hour ago and there's a truly great nurse on tonight—“
Things are like this: Contented (as far as possible, under the circumstances, and ignoring the ever-present discomfort) and optimistic one moment or even for some hours in a row, then white-knuckle the next, and you can never tell when the next episode of real pain or spasm or dysreflexia or respiratory crisis is coming. The rehab staff is pretty good at responding almost instantly to these things, but they happen nevertheless. It’s a bit of a reminder of the way this whole thing started, a bike ride up a familiar canyon, a brilliant autumn afternoon, the wind whistling (I assume) in one’s face, and then blam!--the world changes.
Just the same, despite these setbacks, there’s progress. There’s a little more motion in the right hand, not just the thumb but also the middle finger; there’s sensation on the inner thighs and calves; and he can feel it when the suppository is inserted for bowel care (sensation in this region is particularly significant, since it’s at the bottom of the spinal cord). And he’s been working hard on the mats in the gym—just yesterday, under the care of the physical therapists you see in the photo I hope will be attached here, Rob and Paul, he managed to hold his trunk upright, arms braced behind his back, for at least five minutes—a huge milestone, they said.
Even more important is cognitive function: while there are still periods of stress-induced, sleep-deprived, or drug-associated confusion (as for example when somebody was reading Wittgenstein to him the other day, something he normally loves), he has also got times of wonderful lucidity, including a whole book mapped out in his head. He says that as his mind gets clearer he’s got a much clearer picture of all the assistance he’ll need—but, of course, that’s where you all come in. Already, a couple of computer-minded folks are learning Dragon Naturally Speaking, the voice-activated program that lets you just talk to the computer and produces written text on the screen, and meanwhile, others are hatching plans for Getting Brooke Into His Garden (this will be an exciting contest!). He will move on Tuesday March 3 to the skilled nursing facility at South Davis for (my guess is) a month or maybe two; it’s just a 13-minute drive from their house, according to friends who live on Capitol Hill, so this isn’t out of range at all (and because of their more relaxed program, he’ll welcome visitors even more—just call me, 801-824-9160 and I can tell you how to get there). And vent weaning is still going forward, so in spite of the white-knuckle moments there’s plenty to celebrate.