While those of you in Washington were bundling up this morning to brave the cold for the Inauguration, and those of you who weren’t in Washington were sidling up to television sets, Brooke was here in his usual room, beginning a usual day.
A usual day goes like this: waking up at 5 or 5:30, then bowel care, then teethbrushing, then a shave—Brooke has sometimes said that it’s the shave that keeps him from despair, though despair doesn’t seem to be in the air today. Then he usually sleeps for 45 minutes or so, and then has breakfast, fed to him by a nurse. (This morning it was sausage and pancakes, pretty good.) Then nursing care—vital signs, medications, more bowel care, suctioning, and getting dressed—just having a paper brief, loose pants, and a simple shirt put on takes at least half an hour. Then the therapies begin: driving the wheelchair around the hospital using a three-button headrest (forward, left, right, and on the same button as forward, also back—you can imagine the challenges here, but he’s getting good at it); work on motion, including electrostimulation and vibrations—there are some responses from biceps, triceps in the left arm, and motion in the hips and right foot as well;—and then work on the voice-recognition computer. The speech-and-swallowing therapist also shows up, but since Brooke has graduated from dysphagia school and can now eat anything, and since his voice (when he’s allowed to use it) is just fine, she usually just curtsies out the door without anything to do but smile.
But today was the Inauguration. By quarter to ten he was demanding to be transferred into his wheelchair (this requires putting a sling underneath him, then hooking it into an overhead bar, then using a sort of modified forklift to hoist the sling from the bed to the chair, with Brooke dangling in it. There’s a lot written in bioethics about the importance of dignity, and it would seem that there’s not much dignity about many of these things: the diaper (though they never call it that), the sling, as if you were a load of cargo (imagine two hundred-pound bags of cement), or the relentless bowel care, which it really would violate dignity to describe. It’s amazing how Brooke tolerates all this stuff without complaint, except of course on those few occasions where it is ineptly performed. He has an air of patience, usually, when they’re doing things to his body that he can’t move or feel, but just the same knows what is going on.
But back to the Inauguration. Once in the wheelchair, and once the ventilator is hooked up for travel, he drives fifteen feet down the hall to the dayroom, where people are coming in to watch the ceremony on a giant flatscreen TV. It’s about ten minutes to the swearing-in: we’re seeing former presidents ushered in, catching glimpses of the immense crowds on the Mall, hearing the invocation. Here in Rehab, watching it, are people in wheelchairs (though Brooke has the only motorized one), people on crutches, people with huge chest braces, people with IV lines embedded in their arms, and a man on a gurney; and there are nurses, aides, family members who look able-bodied in comparison. The doctor is sitting on the window-ledge, among people who are immensely grateful to him, spellbound by the events in Washington; he understands his patients, because he was once paralyzed himself.
Here, wheelchairs are normal; in the outside world they’re not. Much of the resonance of the Inauguration has to do with racial disparities and people who have been disadvantaged; but here in this room are people who are just waking up to their new disadvantages too. Brooke is scheduled for his first outing this Saturday (last week’s trip to the fine-arts museum had to be cancelled), but this will be the first time since the accident two months ago that he will be in an environment in which he’ll be seen as disabled by people who are not. You have all known him as the person he still is; but the gaze of those who don’t know him and see the giant wheelchair before they notice the person won’t be nearly as kind.
But of course the Inauguration is about overcoming disadvantage, about not letting others’ views of you determine who you are. We could mouth some platitudes about not letting this happen here either—but we have yet to see how hard this is. In any case, he’ll be staying here in Rehab a bit longer—at least up through the beginning of March—so the realities of the world can perhaps be kept at bay and he can continue just to enjoy visits from you, people who already know and love him and will see the wheelchair last.
Yes, visits. His talk-per-day limit has been raised from two to four hours—that’s terrific. The lung problems are less severe. He has some very good days, like today, and he might even show you how he can move the fingers on his left hand. It would still be a good idea to give me a call (824-9160) to see if the moment is a good one if you’re thinking of visiting, and it’s still the case that he has therapy sessions all morning until noon and from 1:00 to about 3:00 or 4:00, so late afternoon and evening are best; but a little more visiting is possible now, at least if (please promise!) you don’t have a cold.
Besides, you might catch us listening to Bob Marley, wiggling our shoulders to each other in time to the music. And celebrating the Inauguration—Brooke had a tear in his eye during the ceremony (as we all did) but now it’s enormously relieved enthusiasm, and we’re looking towards the future in many optimistic ways.