Now that Brooke’s time at South Davis is, we hope, drawing to a close, as the surgery for the diaphragmatic pacer that may make it possible for him to get off the vent approaches, we thought it might be interesting to describe the room in which he has spent the past 13 months—virtually his entire 68th year. Part of the time of his stay in this facility he has spent 22 hours a day in this room, except for a few excursions, trips to the University hospital, and wheelchair rides around the block last summer, and for at least two and a half months last fall he spent 24 hours a day in it, in bed. Needless to say, the room and the objects in it have become extremely familiar to him.
The room is on the southeast corner of the hospital building, on the second floor—it’s the last room down a long corridor, but there’s an outside staircase right beyond his door that makes it easy to reach him. The room has a window that faces onto an extremely banal street, with one-story brick houses and apartment buildings across the way, inhabited by ordinary citizens of Bountiful, Utah. When Brooke was doing trach masks in his chair, many months ago, he used to sit staring out at this view, watching the human activities on the other side of the street—people picking up mail out of their mailboxes, schoolchildren walking home with backpacks slung on their shoulders, and so on. But from his bed, he can only catch a side-glance view of the outside world, watching the seasons pass, as the days grew longer last spring, then shorter in the fall, and now longer again, Usually he catches his most concerted glimpse out this window in the early morning, when, if he is turned on his side, he sees the tops of the trees in the near distance.
That’s it for the outside world, for most of Brooke’s day.
The most striking thing about the room when we first entered it was the color of the walls, a kind of light chocolate brown called “mocha” that is extremely pleasing to the eye, especially when the light from the window or from the lamps inside changes. Like the other rooms along this end of the corridor, Brooke’s room had obviously been newly redecorated when he arrived. The other aspect that struck us was the furniture: clearly some effort had been made to turn this hospital room into something more like a hotel room. There’s a (pseudo)mahogany armoire which conceals the television (rarely watched); there are three or four upholstered chairs, there’s a matching mahogany side table with a lamp like you’d find in a genuine living room, and a large green fold-back chair in which, if it were just a little more comfortable, a visitor could spend the night. There are two matching dressers: one with packets of catheter tubes and pads and trach supplies; the other with Brooke’s clothes and an entire drawer of greeting cards from last year’s Christmas and virtual birthday. There’s a sink, with various dispensers of hand-sterilizing liquid. There’s a dispenser for latex-free gloves in three sizes, small, medium, large, which every aide or nurse who is going to touch him puts on when they come into the room. Then there’s the bigger stuff we’ve brought in from the outside: a CD player and an ipod player (wonderful gifts); 3 wooden barstools (garage sale, $10) great for sitting by the bed; a bar-height chair (garage sale, $12) even better for sitting by the bed, and drawings everywhere by granddaughter Sydney, some made when she was still four, some when she was five, and the most recent ones now that she’s about to turn six. Oh, yes, and the medical equipment: the ventilator, of course, a big machine that sits next to the head of Brooke’s bed, with its elaborate array of hoses: blue ones for air going in, white for air returning out. There a suction device, and the much appreciated CoughAssist that clears secretions out of the airway. There’s the giant wheelchair, parked as nearly in the corner as you can get it to be. There are examination lights overhead—we put in broad-spectrum flourescent bulbs--though for the most part we keep the lights pretty low, like the ambience of a living room. And, of course, the bed, this enormous, bariatric-width low airflow bed that has been so effective in preventing bedsores.
Central in my focus, though, says Brooke, is a landscape painting—two canvases, separated by about a foot of wall space—depicting a pastoral scene in autumn: a meandering brook in the foreground, various trees in the near view, and a woods in the background, all in muted colors complementing the wall. I used to stare at this painting obsessively in my early months in this room, partly because the two sides of the painting don’t quite match—an effect clearly intended by the artist, who invites you to imagine the part of the landscape that isn’t depicted, but falls in between. For some months, however, I have hardly looked at this painting, as if it were like a CD played too many times that you come to know too well. To the right of the painting, now, are some signs taped to the wall: one of them contains an odd collection of runic sayings: Keep moving all the time. Om mane padme om (in bold letters). Easy on the water after 7 pm. And om-ah-hung. I use the saying in bold letters, which is in Sanskrit and means something like “After the sacred syllable om, the jewel in the lotus” as a chant that I can repeat over and over again when I’m using the speaking valve during trach mask, to try to get the sounds to come out naturally—not from the throat, which makes them raspy, but a little higher up, in the mouth. Below this sign is another my own handwriting, if you can call it that, done with the help of one of our occupational therapists: it reads Take refuge in the Teacher, in the Way, and in the Sanga. On the dresser to the left of these signs, now filled with flowers from my birthday, is a set of drawings that I’ve made over the past few months, including a rocket ship going to the moon, an igloo, and a house. On the top of the armoire are various CDs and books, the remaining three wineglasses (we keep breaking them), the photograph of a Buddha figure I took in Myanmar, which we talked about some time ago, and another Buddha image given to me by the Lama on a visit a while back, and a Big Man’s hat from Papua New Guinea, given to me by our anthropologist friend who does research there. And, of course, there are numerous sticky notes, some with phone numbers, some with reminders, and some with hearts that say Love.
Over the past thirteen months, I’ve lain in bed in this room taking hundreds of thousands of deliberate deep breaths, sometimes listening to books on tape, sometimes to music—especially Bach. It may sound confined, but I don’t think I’ve ever been bored in this room. In the daytime, I’m concentrating on breathing, or on the nursing staff and what they do for me, or on the friends who bring me good meals and read or talk with me, or try to envision this blog as a whole; when I’m awake at night I’m peering into the reflection of the ventilator light on the mahogany surface of the armoire in front of me. For some reason, this is not boring to me; it’s just part of the life I’ve been living in this room. My Room. After all, this is, in an only somewhat stretched analogy, really a Room of One’s Own, my own. Virginia Woolf’s notion of the room of one’s own was to have a space for doing what one wanted most—for her, to write; for me, at the moment, it’s more elemental: to breathe. It seems amazing to me, now that I may be about to leave, that I’ve lain here for over a year working on breathing, now up to between four and seven hours a day just breathing, taking deliberate breaths, attending to each one, in and out.
In a way, it’s not so different from her commitment to writing: I’ve been using this room to do what—given my circumstances—I’ve wanted most, to achieve the simple capacity to breathe on one’s own. (Perhaps that’s why I haven’t been bored, not for more than a year.)