A few nights ago, Peggy went to a gathering hosted by our friends Dave and Liz to celebrate Brooke’s progress so far, precisely a year after the accident. As it happens, Dave and Liz had just remodeled their kitchen, with quite spectacular results, and Peggy was seeing it for the first time. She was astonished by how much a simple renovation can do for a living space like a kitchen—or rather, something that that was already a living space but has become so much more so. When she got home, she took a fresh look at our own kitchen, and realized that it would take some doing to make our fairly compact kitchen available to Brooke in his wheelchair, but that by making use of a dining area that had come to serve largely as a repository for piles of magainzes, bills waiting to be paid, and infestations of sticky notes, the area could be opened up. There is after all a new front door that enables Brooke to get into the house—that’s already one change. And there are new French doors leading out onto the deck, so that now Brooke can now get out of the back of the house—that’s another change. These are both changes we’d never have thought of if we weren’t forced into it by needing to accommodate the enormous wheelchair, but it applies to the kitchen too.
In fact the accident has forced us to think about our whole house in entirely new ways. There are some obvious changes coming: it will have to be far less cluttered, have less furniture, have no carpet or area rugs, and in general be opened up to make space. The same sort of thing is true for the garden—to make it accessible to Brooke, it needs to be completely revised.
When Peggy got home from Liz and Dave’s, she got out a tape measure and a piece of paper to draw a little sketch, and it led us to start reflecting on the kinds of possibilities that Brooke’s injury and the change in our ways of living will necessitate—or, rather, invite. It would be easy to see all of this in a wholly negative light, to dwell on the inconveniences, the disruptions, the expense, the losses and limitations that Brooke’s accident has brought in its wake. The list of losses—loss of ability to be spontaneous, to spend lots of time out of doors, to go to lectures easily, to travel, even just to go to the movies, is of course long--but as we looked at Peggy’s drawing we started to notice some of the opportunities that this misfortune has placed in front of us. It’s difficult to capture the spirit of a conversation that goes on between two dear, dear friends between 11 and 12 o’clock at night, when both of them should be in bed, but that conversation tried to capture the spirit of possibilities that might unfold, and there are many of those. This blog is only one—it would never have been written, obviously enough, if Brooke hadn’t suffered his injury, and it wouldn’t have been written if the injury hadn’t been so serious. We’ve tried to make something truthful, even sometimes beautiful, out of the suffering of the past year. But this is true also for the more concrete, ordinary-seeming matter of remodeling one’s house. Now, we have to think more carefully about how a house functions, what purposes it serves, how it is or isn’t accommodating both for the people who live in it and whether it welcomes people who come to it. Lots of people remodel their kitchens, but that is sometimes just matter of trendiness or glamour; for us, it requires a complete rethinking of how we can live together in the future, not only with each other but with Brooke’s medical caregivers and with our friends and family. We have to rethink cooking and eating from the ground up. About cooking: Brooke used to be the cook in the house, and he was happy to cook in a relatively modest kitchen—no granite countertops, no warming drawers, no hanging racks of copper-bottomed Italian saucepans—but now he’ll be cooking by administrative fiat—that is, we imagine, reading recipes on his voice-activated computer, telling the rest of us what to stir, what to chop, how much spice to fold in, tasting sauces as they simmer. But this can be an opportunity too: we imagine that people will come to cook with Brooke—a joint project, where he offers a bit of culinary experience and sensitive taste buds, and they provide their own culinary experience but also the hands to do the actual work. The product is a joint one. (The same goes for working in the garden.) Already, one of the unexpected benefits of our situation is discovering what our friends eat—they bring wonderful and varied stuff, stuff we didn’t know they made. Now, maybe, they will sometimes actually cook it at our house.
And about eating: We also recognize that eating, that principal focus of many social occasions, with be transformed too—not only does Brooke have to have food lifted to his mouth by someone else as long as his arms aren’t yet functional, but we can’t go to the homes of friends for dinner because they all have stairs—it’s as simple an obstacle as that. But while that might be seen as wholly negative, it can be viewed as an opportunity as well—now friends, we hope, will come to us, cook with us, eat with us, in a way that is more communal and close. We can’t really just invite people for dinner in the conventional way—Peggy alone couldn’t possibly cook it all, and in any case inviting people “for dinner” conveys a somehow more formal message—but we can welcome people for cooking together and then eating what we cook.
The same goes for music. Brooke won’t be able to go to concerts very easily, at least at first, but we hope music will come to us—just as people have been playing music for him in his hospital room—cello and guitar; blues bands; violin duets; classical guitar; harmonicas, and more, we hope they’ll come to us. We often treated our house as a staging place for jumping off into exotic foreign travel; now home will become, we think, much more of a home, a place music happens, a place much more central in our lives.
It’s impossible to see the future, as we all know, though you can see that we are beginning to think about what’s involved in Brooke’s coming home. As we are both painfully aware, it is easy to slip into depression under some circumstances, especially anxiety about a radically changed future; depression is a constant temptation. But it is also possible to put on different mental and emotional spectacles and try to see the rich possibilities that may open up if one can only hold onto a spirit of optimistic open-endedness, and be willing to rethink some of the most basic things about how one lives—including, for instance, something as seemingly obvious as how one lives in one’s house.
None of this is to imply that at the present moment Brooke’s physical situation is not continuingly difficult—sometimes he’s blazingly hot, sometimes freezing cold, a matter of impaired temperature regulation. Relentless days of hard work on trach-mask trials breathing off the vent (5 hours and 20 minutes yesterday, most of it blissfully easy) are followed by a predictable day or two of collapse (only an hour today, every minute of which was a struggle to stay afloat and to stave off panic). Sometimes there’s whole-body pain, though fortunately not too often. He’s still confined to bed while the wound from his abscess heals, perhaps a week or more to go, and longing to be able to get up into the wheelchair and move around. Yet we can still imagine a future in which these difficulties subside at least partly and a new era of living well together opens out to include Brooke and everyone who cares about him. The trick is how to remodel an ordinary home into one that is a source of renewal, not just for its occupants but for everyone who comes into it. We have been talking about a more “home-based” life; but are only beginning to think through what “home” can mean.