A couple of days ago, Thursday, Brooke made a much-delayed visit to our house on M Street—at long last. The purpose of the visit is to inspect once again what needs to be adapted for him when he returns, sometime late this winter or early spring we hope. (All dates are pushed ahead in this particular experience.) One of the things that he noticed driving in in the South Davis van was that the deep sadness that he had felt on previous outings, to the hospital, to Snowbird, etc., was oddly missing. You would think that driving up through the Avenues to our home would be an extremely painful experience as he passed by familiar houses, streets, trees, even Avenues pedestrians, but strangely this was not the case. What emotion Brooke felt was more like acceptance of his new situation, even though he was practically flat on his back in the wheelchair in the South Davis van, having been ordered to stay off the lesion on his butt, even though he could see only a portion of the houses he passed. Only a couple of months ago he would have cried at this experience, but now at this time, he felt a kind of serenity. The serenity also passed over into his arrival at our house. It’s true that he felt a certain loss in not being able to rake the leaves on the front stretch of lawn under the three sycamores that line M Street, something he actually loved doing, but for the most part the house seemed welcomingly familiar.
Brooke has actually visited the house one time before, when an appointment he’d had at the University Hospital had been canceled without informing South Davis; we’d suggested stopping at home for half an hour on the way back. That time, he was strapped to a gurney, pulled by two of the South Davis transportation staff; but perhaps it was that visit that absorbed the emotional impact. At that time, the grapes were still small on the grapevine and everything around the house was a brilliant green; we sat on the deck outdoors and ate an impromptu lunch with a neighbor and the transportation guys. What he felt then had more to do with the unexpected nature of the visit; this time, the visit was highly planned, and had a specific purpose as well.
The purpose of the home visit this time was to find out what it would be like for Brooke to negotiate his way around the house as it is currently configured, with its present accoutrements—a thick rug, lots of furniture, piles of papers on the floor, a beautiful new front door that however is not easily negotiable by the wheelchair because of the narrow approach angle past the low rock wall that stretches across the front porch. But during this entire visit Brooke actually felt happy, not just at seeing a space filled with objects that he loves but also a number of people he also loves, including Peggy, Michael, Dave, and Peter, those from South Davis—Dominic, Emily, Bryan, Rob, and also Peggy and Leah from the Tribune. What a party! There was almost a festive atmosphere to the visit, as Brooke rose to the challenge of negotiating the front door with aplomb, and once in the house started to explore it with his wheelchair (which is almost as big as a Harley), the way a kid who’s been away for a couple of months’ vacation zooms around his own house from one room to another with a kind of glee.
Brooke’s explorations involved going into spaces small enough that it was difficult to back out of without crashing into one piece of furniture or another, challenging himself to find his way in and out of the kitchen in narrow spaces—going forward, backing up, going forward at a different angle. This may have left dents in various pieces of furniture in the house but the experience was exhilarating. Perhaps the most exhilarating, not to say frightening, experience of exploration involved going out through the new front door. He went up over the lintel, not yet fully finished –it was quite daring that he should have done that--but terrifying. He came down off the lintel, about an inch above the level of the concrete porch, with the low rock wall that goes across the front porch in front of him. Perhaps it’s a bit of an exaggeration, but it seemed as if the drop might have sent him flying over the wall, and the look on his face was one of terrified surprise, as he really didn’t think the huge wheelchair could stop before it crashed into the rock wall, something particularly dangerous because the chair has no functioning seatbelt. But it did stop. Everybody laughed, but it was clearly a laugh of relief that nothing worse had happened.
What is responsible for the change in Brooke’s emotional response to this particularly journey? What’s the reason for his comparative serenity as he drove through familiar streets that he’d driven down nearly every day of his life in Salt Lake City over the past thirty-four years when he was still a “normal”?—time certainly has something to do with it. It’s been over thirteen months since his accident and he is beginning somehow to learn to live in his new body, with all of its limitations. That’s why when you see people in wheelchairs, he says, they sometimes appear to be so at home in them, so not-angry, Some of them have lived in wheelchairs for decades; this is their way of being in the world, much as your way of being in the world is to walk on two legs and to be able to climb stairs. What’s remarkable is how slow the transition from a “normal” way of being in the world to a “non-normal” one--call it disabled—is extremely gradual and probably never ends, but surprisingly Brooke’s experience during the home visit demonstrates that it does take place. Driving his wheelchair around the house did not feel to him like a “weird” experience, he says; it certainly didn’t feel “normal” in a place where he has lived for over thirty years, but it was not like riding a horse around the house. But driving the wheelchair around the house has, like being driven around the Avenues, convinced him that he could live in those spaces again and be driven down those streets and not feel particularly consumed by mourning, as he would have thought he would have been four or five months before this.
Note, Friday. The timing of the visit home was fortuitous, because tonight his doctor has told him that he will have to spend the next week confined to his bed again to avoid placing any pressure on the wound on his buttock. It’s just a superficial skin wound, not a pressure sore, but right under the sitting-bone and so in a very bad place. In fact, this home visit seemed like a bit of playing hookey on Brooke’s part, since he might not have been given permission to go. But what’s done is done now and the wound looks no worse.
Second note, Saturday. He’s still in bed, and although the wound is looking better he’s got a UTI, probably associated with the Foley catheter he’s been wearing to keep the wound from being exposed to leaking urine that happens with straight-cathing. Funny how fixing one problem leads to others; but at the moment—after several very hard days-- he’s smiling, even laughing, as we discuss whether it’s appropriate to put this level of anatomical detail on the blog.