by Mark Doty
It took the form, first, of pleasure. Wally’s response to being brought something good to eat, or to a foot rub or a warm sponge bath, would be so enthusiastic and grateful that the people who took care of him found it somehow easy, their work in itself a pleasure. It became a source of wonder to me that a man who could do so little could take such unmitigated pleasure in the world.
A photo from that summer: Wally’s sister Susan had come to visit with her two dogs. Both the visitors—a weimaraner and a spotted spaniel—are standing on the bed with Arden, all of them looking excitedly in the direction of the sun pouring in the windows, and Wally’s sitting up, propped up on pillows, naked, as he was all that summer since it was so difficult to get him dressed and he didn’t much seem to care. A plaid sheet is pulled up to his waist, and he’s leaning sideways at the angle he’ll more and more assume. He’s grinning in utterly absorbed delight at the pack of dogs who’ve taken over my side of the bed. It’s the face of a very happy man.
A certain boyish stubbornness emerges, too—mild, at first, though later he’ll tend toward the bullheaded about what he wants or doesn’t. For now, there’s something undeniably sweet about his wanting, his ways of insisting on his preferences. He decides that it’s fine to be seen in town in his wheelchair, and every day or two we make the trip. Preparations—choosing clothes, getting dressed, packing a little bag of supplies, getting into the wheelchair and out of the house—are themselves a major undertaking. Often, moving Wally stimulates his bowels, so we’ll be halfway out the door and need to turn back. Getting to the sidewalk café for a lemonade or glass of juice, bumping along the potholed street or ripply sidewalk (one never notices, until pushing a wheelchair or riding in one, just how rough familiar surfaces really are) exhausts him, so that he’ll sleep for hours once we’re home. He conceives a desire for a pair of Birkenstock sandals, a good idea, since they’ll be easy to slip on and off, and some of his shoes present a problem for whoever’s helping him to dress. Wheeling to town for the new shoes on a sunny afternoon, we must comprise a scene: a black umbrella’s spread over the chair to keep the sun from Wally’s face, a blanket’s draped across his lap, a straw bag hung on the back of the chair to carry his urinal and his money (he wants to use some specific funds to buy the shoes).
He’s tired today, after getting ready, though determined to accomplish this, but when we get to the store where he wants to look there’s an impossibly high concrete step out in front, one neither of us ever thought twice about walking up, but in the wheelchair it’s entirely another matter. We try tilting, much too far backward to be safe, but it’s no go. A friendly stranger tries helping me lift the chair, one of us on either side, but the ill-designed single step is so high that we can’t clean-and-jerk the two hundred pounds of Wally and chair and accessories. But he will have those shoes, and have them today. A clerk in the shop, happily, is willing to bring all the sandals out to us; from colors and styles spread on the sidewalk, Wally chooses just the right pair, and wears them home, new tobacco-colored suede shoes whose soles will never even be soiled.
Dream: I’m going down to the shore, a crooked and circuitous path, and I have to negotiate my way through dark little ravines, like person-deep cracks in asphalt, to make it out to the water. It’s evening on the bay, the surface shimmering, very quiet, a sense of mystery. Arden’s come with me—only he’s a lighter color, all golden—this is the spirit Arden—and I’m loving him up to say goodbye, because I’m going on a journey, by small boat, where he can’t go. It doesn’t feel like forever, the separation, but something personal, compelled, arduous.
I’m terrified, but I can’t spend a lot of time looking at my terror. There’s so much to do, when I’m with Wally. Attending to his physical needs, keeping him company, maintaining a certain kind of steadiness that’s important to us both. The fear comes when I’m alone. Finally, it seems, I have an appropriate use for all the caretaking skills I learned as a kid; now it helps, my ability to act strong and focus on taking care of others no matter how awful I feel. I can seem most strong when I’m falling apart inside, but the paradox is that it isn’t just a matter of seeming. Strength, at the darkest hour, may be just an effective ruse, a strategy by means of which we convince ourselves we can do it.
Wally’s new experience is of being carried through this new part of his life, supported by the home health aides, by me; we find ways to make each task possible. As each daily necessity becomes difficult, in its turn, someone suggests a means to make it easier. We find ways together when it seems there aren’t any ways.
And with each new indignity or limit—increasing incontinence, for instance, since Wally’s more and more frequently missing the opening of his plastic urinal, and winding up with wet sheets—he fusses a little bit, and then seems to accept the new situation with laughter.
Take, for instance, the matter of shit. Inevitably, sometimes Wally just doesn’t make it to the portable commode in time. Other times, being moved for some other purpose—changing his sheets, say, or getting into the wheelchair in order to visit the doctor—sets his bowels to rumbling. Shit is a new fact of life, and one I find myself thinking about; powerful, it interrupts every other interaction—no matter what else is going on, it stops while we clean up the shit. Like death, excrement is the body’s undeniable assertion: you will deal with me before all else, you will have no other priorities before me.
Poor Wally feels, I know, mortified at first. He needs someone to wipe him, someone to clean him up; he has to let go of the privacy of the most personal of bodily functions, the most hidden.
I learn, quick, to use a new set of tools: latex gloves, chucks, plastic washbasin, baby wipes. The first time I clean up a huge, particularly odorous mess I feel an involuntary, physical sense of revulsion. I think I’m going to be sick, though I don’t want to show how I feel. And then the feeling passes as quickly as it came. It’s just Wally here in front of me, needing cleaning up, and he’s easy to help.
Still, for him this is a deep admission of incapacity. But only for a little while, since Darren, when it comes to shit, is a wonderful influence. Darren’s genius is to make the whole situation funny—making a joke out of whether or not Wally needs a bedpan, about the size of his bowel movements, about the noises he makes. Whenever Wally looks the least uncomfortable, Darren transforms his vexation to laughter. Patient, earthy, he eases Wally (and me) toward acceptance.
(Even now, writing this, I’m helped by thinking of his practicality, his wise focus on what-do-we-do-next. Whereas my tendency is to spin off into some airy interiority, to focus on grief and upon spirit, he brings me back to the plain facts of cleaning up, the daily work of making things better, cleaner, brighter. We’re sustained by the daily, held in the world, and because people who do the work Darren does are accustomed to being with the dying, they’re used to staying in the present, seeing what there is to be done now.)
It’s August, and the start of school is looming. I can’t not work—how else will the mortgage be paid?—but how can I leave for the two days each week I need to spend at the college? Darren’s the solution for that, too. He’s been looking for an apartment, and our second floor is empty now, since I’ve moved my study downstairs to the room next to our bedroom, so I can hear Wally if he calls. After some discussion, it’s agreed: Darren will live upstairs, and in return for taking care of Wally the nights I’m away, we’ll charge him a reduced rent. My impulse is not to charge rent at all, but he insists, saying if we don’t charge him he’ll feel responsible for everything. We try to keep the boundaries clear, and I breathe a huge sigh of relief. It’s still enormously hard to go to work, those first days—is everything all right? how many times a day can I call without being a complete pest? And yet it’s a break for me, too, a chance to think, to listen to music in the car, to listen to silence.
I travel to a distant city for a reading. My sponsors have housed me in a fancy hotel, and I have the night to myself, up in my room on the eleventh floor
. I go out for a walk, have a little supper, and then back in the room I open the sliding glass doors and step out onto the balcony. Suddenly I find myself utterly terrified by the height, the cars and people and strip of beach below; I can’t stop seeing myself plummeting, thinking what it would be like to fall head over heels, tumbling all the way down until the moment of impact with the hotel driveway.
I back into the room, sit down beside the glass-topped desk, with its phone and blotter and stationery. I grip onto the arms of the bergère chair, as if I’m fighting a gravitational pull toward the balcony, the lure of the eleven stories. I break out into a sweat. Is that what I want, to die?
But I have a dying man to take care of, I have a life resting almost entirely on my shoulders.
Or is it that my life already feels like that plummeting free fall?
I can’t think of anyone to call and say, I feel like throwing myself from the hotel window.
Or, I feel like I’ve been falling from a hotel window for months.
I force myself to bed, and in a while into lucky, obliterating sleep. I have work to do, the next day, which almost blocks out the memory of the balcony view.
And once I’m home, I can place the experience, that terrible pull, in firm brackets. I have so much to do here, now; I have this sweet, needy man, this illuminated face—and in fact when I’m with him I don’t think so much about the state of my life.
Darren’s move into the house goes perfectly smoothly. If asked, a few months before, we’d have said we’d never have been able to deal with all those people coming in and out of the house, all that disruption of our privacy. In the same way, we’d have thought it a burden and a distraction to have a roommate, like having a continual houseguest, but it’s not that way at all. And there’s an unexpected benefit, for me—another person around who isn’t sick, someone else to talk to, someone to confirm or question my perceptions. Company, support. We talk in the kitchen, often, while Wally’s asleep. Darren helps me to chart a course, to have a sense of ongoingness. He helps me to feel it isn’t me who’s dying.
There’s only a bit of confusion, which seems in retrospect about displacement, about fear and anger at losing control. Darren has a pair of faded jeans, 501’s with rips at the knees and thighs, and they look exactly like a pair of jeans Wally used to have—ones we gave, I think, to the thrift shop. In any case, I can’t find them, and Wally’s convinced for days that Darren’s stolen his pants. He’s insistent, troubled. I tell you, he says, he’s taking right over.
September. At school—just talked to W on the phone and most of the conversation was about his various minor complaints about Darren: not taking Arden out, running too much water, not getting the light switch all the way off, all whining and exasperation. I couldn’t help feeling a flare of anger at him (we do all this for you and this is how you react!)—as well as worried because we desperately need Darren around. I don’t know what we’d do if W rejects him now.
And beneath these feelings is sadness—at seeing W getting smaller and meaner—I understand, I guess. It’s inevitable—how could he be in bed all day every day, in the same room and not get ugly? Doesn’t seem able to focus on reading, not much in the way of energy for conversation to mediate the boredom—it’s just TV, food, me, home health aides, volunteers. How can he stand any more of any of us?
Wally’s legs twist inward, aching feet pointing toward one another, muscles stiff. The home health aides and I all rub his feet; he relaxes, with his feet massaged, eases back into his familiar, lighter moods.
Every other day I drive to the pool and swim furious laps. I think each week they get faster, harder. I plow at the water, flail at it. Later, I’ll see a picture of myself taken at a reading and be shocked at how thin I look, close to cadaverous, an Egon Schiele face out of German Expressionist painting. I’m not aware of losing so much weight.
Wally, on the other hand, actually gains, and the preparation of his lavish breakfasts becomes a ritual. He wants bacon, sausage, eggs—salt and fat in abundance. Of course no one expects someone with AIDS to have much appetite, so everyone’s delighted and only too happy to make him seconds; sometimes he’ll finish all his bacon and ask for more. Various home health aides become his favorites for the breakfasts they make, Beau’s poached eggs, Nancy’s extra-crisp bacon, one week’s favored skill giving way to another’s. An elderly client of Darren’s provides constant gifts of sausage and cheese, mail-order presents which Darren brings home—more salt, more fat. Wally’s eating and eating, though in fact Arden is getting a good share of the bacon, too, growing wider and lazier as the weeks go by.
September. How little I’ve written here—how full these days, or how I’ve filled them, so hard to be still and let myself think, let myself feel. Of course there is this pressing and demanding reality, but I also keep myself hopping, speeding along, since to slow down is to hurt. And what is writing but sinking into oneself, into the actuality of these waters, these days?
If I could have anything now, besides W’s health, I’d ask for a period of rest and quiet and reflection. I’d write and read and let myself, a little at a time, step down into myself—like a stairway down into a dark, intimate kiva—where the work of vigil is taking place, the necessary attending. I imagine there’s a little fire burning there, a few steadily glowing embers, and a quiet chant going on, from me, from some singer in me, honoring and accompanying W’s soul, which is with him as he is making his passage. It’s true, I can see his passage out of the world, or away from it. Not right now, I mean not that he’s dying now, but rather that there’s a leavetaking in process, a movement toward increasing simplicity, away from complexity, activity, expectation. Almost away from personality? The bout of paranoia, with a childlike quality of being threatened, seems part of that—like a day or two when he couldn’t just let go and float on the energies of other people, which are bearing him up—but had to doubt them, struggle. So much better when he can trust and float. There’s enough love around him to carry him now—I want to keep telling him that. And I want to maintain a kind of good spirit for him—he doesn’t need my grief or anger, too. But how to do that without bottling up, putting it away someplace, so that it will manifest in disconnection or depression?
Attention—the work of paying attention.
Wally has bouts of diarrhea of a particular intensity and virulence—not painful, luckily, but persistent and messy, four times a day, six times a day. A good thing, now, we’ve developed this easygoing attitude about excrement. Dr. Magnus diagnoses cryptosporidiosis, an intestinal parasite which can be devastating, since there’s no cure for it. The hazard is dehydration, and malnutrition from the inability to absorb food. We’re grateful Wally has this cushion of extra weight, and an appetite. He starts a new antibiotic, one that might at least control the parasite if not kill it.
Wally develops new food cravings. He’s dying for pretzels, the little thin-stick kind, and I’m always buying him another bag, and sweeping up spilled ones like pickup sticks. And he longs for salt bagels, which I bring home from a bakery in Connecticut on my way home from school. They’re studded with big crystals of kosher salt, and no one else can abide them, but Wally would eat them all day if we could keep them in the house. Overnight, the sea air turns them into a slick mess of salty dough, so we have one day a week of feasting on salt bagels, then they’re gone till I go to school again.
The antibiotic’s one drug that actually does what’s hoped, controlling things so that a bout of diarrhea or two a day is all we deal with. Wally certainly isn’t wasting; we all notice he’s harder to move, but it’s hard to say how much of that is his weight, how much the increasing deadness of his legs and thighs. It begins to feel to me that his center of gravity, the lower back, the pelvis, is increasingly inert.
But he’s a round-faced little Buddha—radiant, newly short-haired since our friend Glen’s come over and cut his hair, setting up a temporary salon in the kitchen with all his hairdresser equipment, a ritua
l tonsure. And there’s something very Siddhartha-like about his sweet acceptance, too, the way he’s here breathing in the present, smiling on this green raft of a bed with his companion dog and cat floating with him. One of our cats, Portia, spends nearly all her life in a trance, dreaming in a corner somewhere, but Thisbe, the lithe, owl-faced tortoiseshell cat we’ve had ever since we first moved to Vermont, seems never to leave Wally’s side now; she’s always curled on the pillow or down near his feet. The world may be flood and unpredictability, a dangerous rush toward heaven only knows what, but the bed’s a safe vessel, the three of them stretched out or curled, sleeping or blinking in the sunlight. Lynda calls and asks, “How’s the Buddha?”
Rena comes once a week to sit beside or in the bed and listen and talk. Their sessions seem intimate, domestic. I go out and ride my bike or run errands while she’s there, but sometimes I come back early and there are Wally and Rena, each with one hand stroking Arden or Thisbe, the four of them serene in the conversation’s deep, quiet round.
October: Hard to think this little book is the journal of nearly two years—so much darkness and sorrow, joy, too. But not today—today I watched Darren wheeling W backwards to go to the doctor, they were backing toward the gate, W’s face growing smaller…Not a good day today, so tired, though the last couple of days have been really fine ones, and Monday we had an amazingly clear, energetic talk, like a conversation we might have had a year ago.
Wally craves Hot Tamales, a cinnamon candy which comes in a cardboard box decorated with cacti and serapes. I buy them at the A&P, in those big boxes candy comes in at the movies, half a dozen boxes at a time. He gets on a roll, eating them one after another, and then slows down to savor one at a time.
