That “what else can I do” seemed to signal a kind of internal adjustment, an acquiescence. Even, in an odd way, a sense of relief. If taking to bed, this new set of physical limits, meant confinement for Wally, it also in some way seemed to mean safety; he wouldn’t have to try now to negotiate a world he couldn’t manage. And of all the dire courses his disease might have followed—pneumonia, retinitis, KS, dementia—this one was what had occurred, a kind of mysterious failing, a fading from the ground up that no one seemed to know a thing about. Our caseworker had seen one other man with PML; he’d gone so gently, she said, a kind of softening of his awareness mediating his increasing physical weakness.
Rationally, of course, having one sort of illness did not preclude having others, but I believe that for Wally the course of things had somehow become clear, the waiting ended. It wasn’t that he could have articulated that. It was simply as if some weight he’d been carrying were lifted; freed of the terrible suspense of uncertainty, he seemed lighter, more serene, ready to laugh.
And a curious thing happened—not just at that moment, I mean, but over the course of that summer, gradually, and by season’s end entirely clear: the descent of some form of grace.
Was it PML itself that gave Wally that peace, erasing terror, disabling that sort of acute self-awareness that would make a misery out of watching oneself fail? Was it a kind, compensatory mechanism in the disease, that took his nervous system’s ability to control his legs away, but gave him childlike pleasure in return, allowed him to keep his delight in the world?
When we heard, late in the spring, that Bobby had died, in a Catholic chronic care hospital outside of Boston, I was afraid Wally would take it hard. Of course he was too sick, by then, for us to even consider going to the funeral, where I doubted we were welcome anyway; Wally, in his wheelchair, was the undeniable evidence of AIDS, everything the family wanted to deny. But Wally had already said good-bye to his friend, that day in the hospital lobby which already felt like decades ago. He met the news with equanimity, a little period of quiet, and then calm.
Over the months which compromised the rest of his life, there’d be moments of pain, of frustration at his growing limitations—but imagine, confined to bed for nine months, having only little frustrations! Darkness might flare at the edge of things, but this lightness would stay.
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 ritual 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.
Then he remembers bubble gum. We buy it by the box, and he keeps adding a fresh piece to what he’s already chewing, until it all seems too much work to chew and I have to ask him if he’d like to stop—he looks weary, chewing so much gum.
Then he gets a hankering for licorice, the English kind, multicolored, striped, fancy little pieces of candy which resemble tiny pillbox hats or art deco buildings, little Guggenheim museums or Miami Beach hotels. They’re beautiful. I find them and Hot Tamales in the sheets, down in the crack between the bed frame and the mattress, under the white metal drawers by Wally’s bed, the nightstand that’s become a repository of equipment: thermometer, bedpan, toilet paper, wipes, urinal, moisturizer, drugs, Chinese herbs, remote control.
The Chinese herbs come from our acupuncturist, Samantha. We’re trying acupuncture at the suggestion of our friend Billy, who feels he’s really been helped, that his energy level and overall health have improved.
Samantha comes to the house once a week, and treats us both: tiny stainless needles to boost Wally’s immune system, calm his spirit, and clear his head. I get my spirit-calming points, at the very top of the ears, done too, as well as other points to boost my energy level and strengthen my lower back. I’ve started taking an herbal formula, too, for energy and strength, since I’ve been feeling twinges, the muscles near the base of my spine starting to ache and complain.
Acupuncture always makes me feel terrifically relaxed; a twenty-minute session is like an hour’s nap. Wally claims it does nothing for him, but during his treatment he always falls asleep, and usually stays in a deep, peaceful nap for a couple of hours.
Samantha’s a great believer in herbs, and she’s started Wally on a formula, too, big green tablets containing ginseng, assorted exotic fungi, and some animal products we’d rather not think much about. The pills smell greenly brackish, and Wally would put up with them more gracefully were it not that he’s supposed to take six or eight of the great big things after each meal. He already takes a raft of prescriptions whose names run together into a Latinate litany that would occupy half this page, so more pills aren’t exactly welcome. I think he just does it for me, till one day he’s fussing, after I’ve made him lunch, about swallowing anything else. I say, Oh, you can do it. And he sighs and says, Okay, if I have to. But as he’s swallowing the fragrant tablets (what does that scent evoke? spoiled hay? a stagnant pond?) one seems to get stuck in his throat, and then he’s quickly swallowing some water to wash it down, then choking on the water.
Then he looks right at me and vomits vigorously, a startling turn of events. As I’ve learned to do, I start to make a joke of it, saying something about Linda Blair in The Exorcist, and soon Wally’s laughing till the tears run down his face, and it takes him a long time to stop laughing long enough to say he’ll never swallow another Chinese herb. And he never does.
Our big green four-poster goes back upstairs, to make room for a hospital bed; the hope is it’ll be easier for Wally to sit up, easier for us all to help him. We’re changing the sheets all the time now, and because it’s become very difficult for him even to shift his weight a little bit in the bed, much less to sit up, it’s hard for us and for him—hard to eat, to look out the window, to be washed and changed.
He moves onto the couch—the first and only time he graces our new one—while I disassemble our bed and clean the room. The medical supply company sends a sweet kid who sets up the new bed, shows me how to work the buttons and crank. It’s semi-electric, which means the head and feet raise and lower by the push of a button, so the patient can control it himself. (Medicaid would prefer to pay for the hand-cranked model, something appropriate to, say, a Victorian orphanage.)
The bedroom looks serene now, orderly, but awfully empty with just the single new institutional bed in it. Arden, frightened by the noise and movement of the thing, won’t go near it. Wally sleeps that night with just Thisbe; I’m in the next room on the couch. The next morning, his anger is strenuous, and he’s more passionate with refusal than I’ve seen him in months; this will not do.
I say, let’s give it a try.
He says, No, I won’t have it, no.
Just for a week?
Silence.
Let’s see if we can’t make it better, and then in a week, if you still don’t like it, back it goes.
He’s grumpy about it, but he agrees: one week. I bring down an iron single bed we’ve had upstairs, for a guest bed, and push it up against the hospital bed’s chrome rails. Two single beds together make quite a gigantic bed, it turns out; there’s barely room enough to walk around the perimeter of the room. But there’s room for all of us in the bed, and Wally discovers, by the next day, that he likes going up and down. It’s far from perfect—he keeps sliding down, when the head of the bed is raised, and when he does he looks like a little boy lost in his parents’ bed—but it helps.
New sheets—patterned in scrollwork and flowers, as far from hospital white as we can get—soften things, and help it feel like home. By now, I know this pattern of accommodation: from the disruptive, cold edges of the new fact, toward the familiar. To make something familiar is to make it bearable. Is that why so many gay men have a tradition of redecorating, of knowing how to make anything look good? Since difficult lives require, in order to make them livable, style?
Wally’s legs point more severely inward, seem to want to cross over one another. They’re slender, the muscles soft, atrophied. All his body from the waist down seems more inert, so that it’s really impossible for him to use his portable toilet anymore (so hard to transfer him onto its seat, so hard for him to sit up) or for him to be helped onto the padded bench in the shower. It’s a strain, to try to lift him, and makes me afraid for him, too, the way his legs seem to drift off to the left, his head to the right. It’s harder and harder to straighten out his neck; stiffness is setting in. I rub the muscles to help them relax, but it seems to move back into that angle.
One night when I’m sound asleep there’s an enormous crash. I sit straight up in bed and look around and see that Wally’s gone. In my groggy, startled confusion I can’t think what’s happened, but when I jump up there he is, on the floor beside his bed. His legs have drifted, as they do, off to the left, and he’s been unable to stop himself from simply sliding onto the floor. He’s not, thank God, hurt—is, of course, laughing, but this time I can’t laugh with him. I can’t lift him. Darren’s out for the night, and here I am with this helpless, inert man on the floor, and I can’t do a thing but get a pillow under his head. I think what to do, and come up with nothing. We talk about it. Wally, bless his heart, says it’s not so bad, being on the floor till morning.
In a while, slowly, we get him more-or-less sitting up, then rest like that for a while, me propping his back so he’ll stay upright. Then, his arms around my neck, my legs bent, I try to lift, but his weight nearly strangles me. We try again in a minute, his arms locked around my shoulders. And while he says Oh, oh and I see blinding white light that seems to begin at the base of my spine I haul him straight up off the floor and onto the edge of the bed, and he falls back into it, and I fall next to him.
W’s voice smaller on the other end of the phone—this connection, tender—his narration recognizing just one room and the slice of neighborhood held in his view.
I am so grateful he’s not in the hospital. I’m so angry there’s nothing for his doctors to do, and yet I’m glad too that they can’t hurt him, that he’s here, at home, in a room that feels like us, full of animals and his own food and his own music and his own TV.
November. You’ve seen waves breaking, at the end of their long travelling—it’s as if he were breaking inward, foaming into himself, a tide turning back toward its origin.
I look at him sometimes, just taking in his face, the way he smiles back at me, the way he takes in my attention, unquestioning, loving. The way he says, as he always has, Now what…a sign that means, What are we doing next? Where do we go from here?
Wally’s primary nurse, Paolo, means well, but he’s not a subtle man. There are things about him I don’t like: he wants to be very important to his patients, but he doesn’t really know them, though he thinks he does. He isn’t really paying attention. But Wally adores him, and flirts with him outrageously, admiring the tuft of hair that pokes up at his collar, his thick mustache. All fall, when he’s felt well enough (and, in fact, he always seems to summon some energy from somewhere when he knows that Paolo’s coming), Wally has subtly teased him, turning his serious remarks to jokes, subverting the conversation by turning it to sex in a way that I find hilarious and charming. Paolo only gets the grossest of the innuendo; I love to watch Wally lead him, play with him, and occasionally come forward with startlingly direct questions. Wally is particularly enamored with Paolo’s tattoo, an image of Pegasus, the horse’s wings just unfolding across Paolo’s biceps, his hooves visible, warm days, beneath his T-shirt sleeve. Wally likes to find ways to get Paolo to bend over him, so that the patient can look closely at the nurse’s tattoo.
It makes me think, now, of a man I’d meet six months after Wally’s death, when I visited a writing workshop in New York for men with AIDS. He had watched his own lover die, had come close to death himself, and in the space of a year had endured the deaths of most of his friends. He and I were talking, during a break, about the persistence of desire, about still wanting, no matter what. He said, “It was my dick that kept me alive.”
Is lust a form of hope?
In the last months of Wally’s life, he seemed to experience a reflowering of desire. It was a curious thing, a kind of sex-in-the-head, to borrow D. H. Lawrence’s phrase. Wally’s body, he’d lament (though only for a moment, before he’d go back to the characteristic smile and laughter), was long past cooperating. The last time he and I’d had sex was over a year before, in the autumn of ’92. Even then, though his body accepted mine against him, I could tell it was something that was over for him. Hard to say, now, whether his impotence was a matter of depression or tension, or whether an early effect of PML was to sever the connections between genitals and brain. Even the thought of sex seemed to vanish for a while, to go underground.
I’d long since taken to quick, congenial encounters to relieve the pressure—the sort of erotic adventures that Wally and I used to enjoy together, when the need for sexual variety had presented itself, as it usually does, for gay couples who stay together for years. Well, I suppose such needs present themselves to all couples, but gay men have different traditions for negotiating these waters. We’d learned over time to relax about sex, and to know the difference between our commitment to each other and casual, playful sex outside the relationship.
The current of Wally’s erotic life had slowed, been dammed.
But in those last months, desire made itself quite visible once again—the underground stream rising, as it were, from a trickle to a roar.
My friend Richard—a poet and novelist in town for the year, on leave from the university where he teaches—would come once a week to sit with Wally for an hour or two, usually while I was away at school, an opportunity for different company and chat. Wally loved these visits, because Richard was a fountain of gossip, good stuff, the specifics about various men and what they liked to do and with whom. Richard’s been through this before, and he understands being with the ill in a way that only experience teaches; he knows how people at the furthest extremes of life crave the daily, the little news, the everyday meat of the world. (Sometimes my friends would apologize to me for talking about their problems, saying that what occupied them seemed trivial next to what I was experiencing. But I wanted to hear the sound of everyday talk, the chatter and questioning and considerations of ongoingness. I was living in the essential.)
So Richard understood that Wally wanted to hear all about his friends, and Wally would ask questions, and also ask about people passing by on the street whom they could see from the bedroom window. In this way, Wally found out about Daniel and Jack, handsome men in the neighborhood who were friends of Richard’s.
These two became important elements of Wally’s fantasy life, a set of uncensored longings and imaginings which tumbled out all during the day. Expressions of lust might be followed by a kind of sweet sigh which seemed the mark of a schoolgirl crush. “Do you think,” he’d say, “he could like a man with useless legs?”
Sometimes I’d feel a little threatened, weirdly displaced, but only for a moment; looking at this compromised, inexhaustibly sweet man, who could be upset? What he was saying wasn’t about us, but about a kind of nostalgia for all his life, for desire, the ties by which the body threads us to the world. The one time I lost my temper, in all that long last year, had to do with flirtation. I had been racing around making arrangements to be out of town for a couple of days; I’d won a literary award which was to be presented in Los Angeles, and I was going to the ceremony. Wally had been thinking about his earrings, which he’d taken out a year before, for a CAT scan, and never replaced. And he was thinking specifically of Paolo, due that day for a visit. A half an hour before I had to catch a plane, he announced that he wanted his earrings in, wanted me to put them in.
I’m doing last minute things, trying to make sure Darren has everything he needs, that the home health aide and volunteer schedule is set. I’m a little nervous, and already dressed, and I’ve never liked putting in earrings, and they’ve been out so long I’m afraid the holes have closed, and the last thing I want to do is deal with blood and alcohol.
Wally says, Oh just shut up and put in my earrings.
And I find myself furious. Without even thinking about it I’m saying, Will you please just think about my needs for once, what you need always comes first…
As if he could help it, as if what I needed could have much of any reality for him, as if he could see past the bed, the room, the round of his visitors, the little opera of wishing. Before I even get the words out of my mouth I’m ashamed, and though it’s nine o’clock in the morning I feel tired and sad.
Darren takes care of things, inserting the earrings, getting me into the taxi to the airport. I call from Boston, and Wally and I have the sweetest talk.
Flirtations continue to occupy his daydreams. Darren helps him write a note, to Daniel, inviting him over for a visit. Richard, I’m sure, explains the context of the out-of-the-blue note. Sometimes I feel embarrassed at this outbreak of lust, my lover’s unapologetic interest in practically everybody. Sometimes it makes me sadder, this autumnal flowering of love for bodies, the longing for beauty. And other times I see it in perspective, a way that a man who’s always loved the world continues to do so. One day Richard and Wally are watching MTV, and there’s a particularly awful video whose intention, like lots of late adolescent heavy metal imagery, is to romance death, to borrow the intensity or charge of the conventional imagery of darkness and mortality. In this particular video, a distraught woman is walking around a cemetery in a shredded black dress, singing.
At Wally’s memorial service, Richard will tell the story about how Wally eyed the woman on the screen and said, “Girl, take off that graveyard gown.”
Which was, in part, what his little flirtations were: a refusal to mourn.
In November, I give a poetry reading at an arts center in our neighborhood, an evening with a special sort of shine to it because I’ve been nominated for a literary prize and the evening feels like a celebration. Wally very much wants to come, though he’s also nervous to be in a group, in a public setting. He sits at the end of the aisle, in his shiny wheelchair, next to Darren, and he hears just one poem before he wets his pants and needs to leave, but it doesn’t matter. The important thing has happened: he’s come to see me, he’s been a part of things.
Just after Thanksgiving is Wally’s birthday, and I plan a surprise party. I’m afraid it would be too much to have everyone come at once, that he wouldn’t be able to enjoy it. So I invite his family to come first, earlier in the day, and then friends to drop in during several hours in the afternoon. Wally loves the attention, seeing his mother and some of his brothers and sisters, and even gets up in his wheelchair to sit in the living room for twenty minutes before he feels he has to go back to bed. We crank up the hospital bed and he receives friends and home health aides who drop in, even Daniel and Jack, who bring him presents which delight him no end. Our friend Polly brings a beautiful little painting she’s done of Arden with a ball, and Wally especially appreciates the way she’s included Arden’s genitals in the picture. By seven in the evening, his bed and bedside table full of candy and cards and little presents, he’s exhausted, and happy. We’re lying quietly in bed when suddenly he realizes it was a surprise party; he hadn’t thought to be surprised. There’s something infinitely affecting in his after-the-fact surprise, his gratitude. He’s had such a good time today we decide we’ll have a Christmas party.
But in the two weeks between that bright day and the party we’ve planned much changes.
Some changes are for the better. School ends for me, the poetry workshop I’ve been teaching brought to a close, not a moment too soon—I’m needed at home, and ready to be there.
And there is a whole new presence in the house. We’d made the decision to adopt a cocker spaniel about to become an orphan of the epidemic, but his owners decided at the last minute they couldn’t go through with it. Wally has been imagining a new dog that would, unlike the dignified Arden, lick his face. He’s imagined the cocker spaniel, small presence, might sleep close to him. Disappointed, Wally sent me to the shelter, and I fell in love with a youngish golden retriever, Beau. The first time I met him he seemed awfully docile, thoughtful; later I learned he was recovering from anesthesia at the time. On my second visit, we went out to the run together and he leaned his golden weight against me, trusting. He wasn’t exactly small, but he did lick, and there was something in the way he let his body relax against me that banished all doubt: this dog was for us.
Beau arrives the day before the planned party, a fireball of energy. The pads of his feet are soft and pink; this dog’s been penned indoors, as underexercised as he’s been underfed. You can see every one of his ribs; his chest is sharp and narrow. He’s wild for play, food, attention. Dealing with him, the startled and intrigued Arden, the bemused home health aides who’re trying to keep Beau from devouring Wally’s breakfast, and Wally himself, I think, What have I done?
Even Rena, with her great capacity for acceptance, will later tell me she thinks I may have lost my mind; it isn’t, rationally, a good time to adopt a dog.
It’s true, Beau’s a handful, but there’s something about his brightness and eagerness that’s welcome, fresh—golden. And the problems he presents are ones I can deal with, too; confused and undertrained as he is, he’ll learn, he’ll begin to understand. Most of what’s troubling in my life right now I can’t do a thing about.
And when he’s tired, Beau heads right for the open space in the middle of the bed, and before falling asleep (he seems afraid he’ll miss something, holding his tobacco-colored eyes open absolutely as long as he can stand to) he licks Wally’s face with a long purple-spotted tongue, source of laughter and delight.
But other changes aren’t happy ones. Wally hasn’t been wanting to get out of bed. The morning of the party, he’d like to take a shower. I’m skeptical, but the home health aide who’s there is stronger than I am, and he cheerfully decides to try it.
The results are disastrous; placed on the toilet, Wally can’t remain sitting up. The room’s so narrow that the aide can’t really get the wheelchair close to the toilet, and it winds up taking both of us to lift Wally back into the chair, and then back to bed, and by then he’s exhausted and in pain, saying his waist hurts—pulled muscles, I’d guess, or aching ones, jarred by movement.
Getting up even for a few minutes for the party is impossible. People come into the room to see him, but Wally can’t really connect with anyone today, and wants to sleep. In the living room, one eye on him and one on the guests, I have the odd sensation of entertaining while, in the next room, Wally’s barely there. A strained, difficult afternoon, and I can’t wait for people to leave.
Incontinent all the time now, Wally’s hooked to a catheter. It looks really unpleasant, when Paolo inserts the tube, but it doesn’t seem to hurt. I have to pee, he says every fifteen minutes. You are peeing, I say. He’s used to it in no time, though it causes an infection which he must take more antibiotics to treat.
Strain and more strain, but his humor sparkles out of nowhere, just when I least expect it. Darren, getting ready to go out, walks into the bedroom one day, rubbing moisturizer into his face. Wally looks at the tube, looks at him, and says, “It’s going to take more than that.”
Another time, I stand by the side of the bed while two eager retrievers leap up from the comforter where they’ve been sleeping until I said the word walk. Excited, bumping into each other and me, they practically knock me over. Wally, entirely deadpan, says, “I don’t know, they’re a lot of work for an old lady.”
“You bitch,” I say, but he is too weak to answer.
Someone in the nursing community complains about Darren living with us—a violation, he thinks, of professional boundaries, even though we’d asked for approval first from the powers-that-be, even though we’d agreed that Darren wouldn’t be scheduled as Wally’s home health aide anymore, he’d just be involved with us as roommate and friend. After meetings and phone calls galore, Darren’s fired for his “lack of boundaries.” This seems to mean he has too much compassion.
But what’s a difficult circumstance for him becomes, for us, a gift. He gets a part-time job selling lottery tickets in a convenience store, to earn a living, but there never even seems to be a question as to what he’ll do next, which is to help Wally and me through. And so I have a place to turn with questions, someone to talk to, someone who’s seen all this before.
December. That face. If it were possible for a face to shrug, it would look like this. A “that’s-just-me-what-can-I-do” face, one I’ve seen W make for years, but which has fallen away. I don’t even realize he’s stopped making that face till suddenly it’s back. Now it means here I am, helpless, immobile, my mind slipping, but what can I do, what can any of us do about it?
I tell Lynda that I’m starting to feel I can’t remember what Wally was like before he was sick; it seems so long now that I can’t visualize the old face, hear the old voice. So she gives me a beautiful Italian photograph album, bound in marbleized paper, and I begin to go through our old pictures and make an album, reaching all the way back to right after we met. With a Polaroid someone gave us ages ago which we’ve hardly ever used I start making new pictures, too, putting the best of them into the elegant book with those old-fashioned photo corners. The book’s a record and testament; I don’t realize, then, how important it will be in a month, how people coming to the house the week before Wally’s service will focus on it, use it as a departure point for stories, memories.
Wally begins to have trouble finding the words he wants. We’re lying in bed talking about something and he says, “Oh, I’m going to mush my mouse.” Then he looks puzzled. “Mush my mouse? Oh, what’s happening to me!” Though it’s said more in amusement than in frustration, more in wonder than in fear.
More and more, he seems to me like someone who’s had a stroke—the trouble with language, his head leaning, one side of his mouth turning downward.
Our friends Michael and Thelma, from Vermont, send a Christmas package, its best gift a big bag of mulling spices for cider. I make mugs of warm spiced cider for Wally all day, and feed him with a spoon. He says, “This is so good.” It feels to me as if he doesn’t just mean the cider; he means the whole experience, the fact of comfort and of pleasure. When did this happen, that he can’t control his own hands enough to eat? And suddenly he seems unable to manipulate the buttons on his remote control; he’s always saying it doesn’t work, the channels won’t change. Of course it’s his fingers that won’t function, though soon he’s tired of TV anyway, and prefers silence.
Michael and Thelma have sent, too, a little wooden angel, from Indonesia, designed so that she’s looking down onto whatever she floats above. I hang it from the chrome trapeze which dangles above Wally’s bed; Paolo had thought it would be good for him, to practice pulling himself up, but by the time it’s arrived Wally’s not likely to do chin-ups. He adores the wooden angel, and tells me how he loves how she watches him.
That face. The pure self which looks out to the world, essence of Wally drinking it in, being here, with me and with Arden and Beau and Thisbe. Self-consciousness, doubt, circumstances, even history stripped away, he’s that awareness, that quality which is most essentially Wally. Its characteristics are wonder and humor, delight in things, a tender regard.
More and more, Wally doesn’t want anyone else around, just Darren or me. Where I used to need to get away, and so take advantage of the time the home health aides would come to do errands, to swim or ride my bike or walk, I don’t seem to need that now; Wally and I are drawing together into something enormous and quiet, spacious but almost unexplainably intimate.
Christmas, Darren goes home to see his family. The other home health aides are off, and it’s just Wally and me at home. It’s wonderful to be alone together. I play music, cook and feed him, sit by the bed and read. We talk a little, until he’s tired from finding words. I go into the next room and write, working on poems I can’t finish but somehow need to be making. Usually I’d only be able to do my work when I’m uninterrupted, but these days are completely different. Every few minutes Wally calls me for water or cider, to change the channel or move the cat or find his Hot Tamales, but it’s fine, welcome even. We’ve arrived at some deep, half-dreaming balance. Outside it snows and snows.
Christmas Eve, I give him packages which I open for him, since the bows and paper represent more labor than he could manage: music videos by the Nashville singers he thinks particularly sexy, fleece-lined slippers decorated with images of bacon and eggs, and a book about breeds of dogs. He says he wishes he had something for me to open, but I don’t want anything except to have him here. There’s nothing more he could give me than his life, right now, his being with me.
I’m thinking I can’t possibly go back to work. What can I do? I’m praying for a grant, which is actually possible, since I’ve applied for money from the National Endowment for the Arts, that lottery in which every American poet buys a regular ticket. A former student calls to tell me he’s gotten word that he’s received an NEA fellowship, and he wants to be the first to tell me and to thank me for the help I’ve given him with his poems. I’m congratulating him and dying on the inside, since I know that this also means I’ve been rejected, else I would have heard by now. Troubled, afraid, I do what I do when I can’t handle things; I take the dogs for a walk. It’s snowed till I can’t get the car out, so we go down to the bay and clamber over the bluish icebergs that have piled up along the shore. We walk for an hour, during which I renegotiate my relationship with fortune. I think, all right, there must be a reason for this, maybe I’m just supposed to work. I think, This isn’t what I’d choose, but we’ll get through it, we’ll find a way.
And in fact, by the end of the walk, I can’t say I’m pleased with the situation but I have arrived at a kind of acceptance; I’ll turn my attention to what I need to do today, and something will work out. When I get home the mail’s come, and there’s a letter from the Ingram Merrill Foundation; they’ve chosen my work to honor with a cash award. “All you need to do,” the letter concludes, “is accept.”
Because Paolo’s on vacation, just after New Year’s, a substitute nurse comes, one we’ve seen a couple of times before. She takes a look at Wally and acts panicked, horrified.
In the kitchen, she tells me she wants him on morphine. It doesn’t matter that he’s not in pain, she says it’s time, and suggests we start with two cc’s. I’m confused. Not that I’m denying that Wally’s somewhere late in his life, but can it be time for such a drug? Would I know, would I be able to sense if it were time for such measures?
Putting on her wool gloves, opening the kitchen door, she says, “Have you made the funeral arrangements yet?”
I feel as I’ve been slugged in the stomach. I’m not naive about what’s happening, but I barely know this woman, she has almost no relationship to Wally or to me, and yet she’s comfortable being this brusque. Does she think she’s helping?
I’m incredibly lucky to have Darren, back from the holidays, to advise me; he’s been through this enough times to have a feel for it, to know the territory. Since Wally’s losing the ability to communicate, I’m terrified that we won’t know how he feels. Will we know if he hurts, if he needs to be eased? Even knowing that face as well as I do, will I be able to read it?
Of course, Darren says, you will. We’ll know. He points out to me that one of the things morphine does is make it easier for people to die, to relinquish their hold. Sometimes it seems that pain is one of the few things that doctors and nurses can do something about, and therefore they’re very ready to act; here, at last, is something controllable. And he fears, too, that sometimes the administration of morphine is about the comfort of the caregiver, about getting the difficult, dying patient out of the way.
Right now, Wally doesn’t need morphine. And two cc’s, administered all at once, with no gradual introduction of the drug to his system, might have been enough to kill him. What if I’d listened, what if I’d panicked and followed the nurse’s advice?
We fill the prescription, so that we’ll have the stuff on hand. The substitute nurse returns on Monday, and this time she wants to talk with me first; she’s decided to counsel me about death.
Of all the things that have annoyed and troubled me about the medical people Wally and I dealt with, perhaps what I hated most was the seemingly endemic practice of assuming that patients needed counseling, and that whoever happened to be around was the one to do it. As people get closer to death, many around them seem to suddenly want to become important, to become experts. And so it doesn’t matter if the patient has a lover, a therapist, friends, family, a whole network of support—an expert’s here. This expert thinks my resistance to her is about denial; I’m not in denial, I’m just hanging on doing the best I can. In fact what I want to do is protect Wally from her attempts at counseling; already, in her previous visit, she seemed to be hinting around to get him to talk about “letting go.”
Doesn’t it make sense that we might wish to have these conversations, if we wish to have them, with people we love?
She seems to think what Wally’s experiencing is denial, rather the way Dr. Magnus, on his sole house call, seemed to think Wally more interested in watching TV than in talking about his symptoms. Can these people tell the difference between brain dysfunction and denial? Or are they so hungry for a convenient explanation they’ll settle for psychological cliché, because it either gives them something to do or lets them off the hook?
I give Substitute Nurse very firm instructions that she’s not to try to counsel Wally, but I decide to hang around and observe her visit with him anyway. Halfway through it, after the requisite vital signs and palpations, she says, “Wally, is there anything you want to do that you haven’t done yet?”
At this point, you might as well ask my lover a question in Swahili. Furious, I shake my head at her, mouth “No.” She packs up her stethoscope. In the kitchen, she says, “I meant, like, have an ice cream soda.”
And so it’s clear that I have another job these next few weeks, which is protecting Wally from people who want to help.
Two friends, Ellen and Margie, come to visit for the afternoon, and Margie writes each of us a letter.
1/10/94
Dear Mark,
Halfway home I remembered the Italian sunflower seeds. Ellen said, never mind. Next time. Okay. Your house felt familiar. It felt just right. Ours is barer, which we like sometimes but in the winter doesn’t feel cozy enough. We need more winter clutter…
I liked so much to see you in your home. That staircase has been in my mind all day, steep and beautiful, and from the bottom unresolved. The resolution’s all in the top with those old staircases. There are many more questions in an old house than a new one, many more in-breaths. New ones have to say everything, spell everything out. There’s a rigid feeling the minute you walk in the door. Old ones have pulses.
January is sometimes a hard month for me, the month I was born in. Usually the complaint is that things don’t move. This winter I have just given up, and it’s much richer, much more enjoyable that way. Sitting in the bedroom with you and Wally felt like the heart of my January. Nothing moving fast, but everything moving. Time and room for my heart to really open there on the bed. Wally’s looks, his grin. Your big lovingness towards him. All the animals. The garden. The sun pouring in. I felt sort of stunned after that for the rest of the day. Good stunned. The way they would put it in the zendo is: I bow to both of you. There feels like a lot of happiness in your house. I don’t know why I didn’t expect that, but when I felt it it just made me want to cry.
Love,
Margie
1/10/94
Dear Wally,
After our visit I said to Ellen, “I feel like I just met Wally for the first time.” There in the sun with all your wildlife on and around you, in that friendly friendly house, I felt this great big spirit pouring out of you, even as you went to sleep. I didn’t want to go. I just wanted to stay and look at you and take you in. You and your plaid covers. The dogs, Thisbe, Mark. Now I can think of you somewhere, now that I know where your bed is. Thank you, Wally. Things move so fast out here. To sit in someone’s slow room and drink tea and look out at the rose hips and imagine the garden, what a good moment.
Love to you,
Margie
January 14. W’s really shifting now—every day I think he’s a little less with us—yesterday looking and looking at me, as if he wanted to fix my face—looking and looking at the dogs. His voice small, trailing away, such effort to speak. Yesterday I washed and rubbed his feet and he said, “I wonder how many people have had their feet rubbed in this house.” It felt as if he was in a different kind of sense of time, entering somehow into the house’s whole history. So many people must have died there, perhaps in that room—
Yesterday I cried in the pool, imagining his obituary and—worse—imagining the bed being taken away. I called his mother and told her she should come down soon, to see him while he’s responsive—we don’t know how long that will last. Snow out, more snow…
Back from vacation, Paolo gives me a handout titled “Preparing for Approaching Death.” A Xerox of a Xerox, it seems to have originated in a hospice program in Florida; it’s a description of what death is like, what we should expect, and how to respond appropriately. I hate it. I hate its presumption, its pretense to lay some claim of understanding on a mystery, but curiously what I hate most of all is that it’s a sloppy, copied and copied again text, offered to me as if I could use it, as if here the unthinkable’s explained, wisdom Xeroxed.
As if any of them knew.
I read a few sentences, flip through the pages, file the paper away, a kind of grim curiosity I think I’ll read sometime. I haven’t read it yet.
But we have, if not our own understanding, our own experience, and it feels to me sealed, inviolable, ours. We have a last, deep week together, because Wally is not on morphine yet, because he has just enough awareness, just enough ability to communicate with me. I’m with him almost all day and night—little breaks, for swimming, for walking the dogs. Outside it snows and snows, deeper and deeper; we seem to live in a circle of lamplight. I rub his feet, make him hot cider. All week I feel we’re taking one another in, looking and looking. I tell him I love him and he says I love you, babe, and then when it’s too hard for him to speak he smiles back at me with the little crooked smile he can manage now, and I know what it means. I play music for him, the most encompassing and quiet I can find: Couperin, Vivaldi, the British soprano Lesley Garrett singing arias he loves, especially the duet from Lakmé: music of freedom, diving, floating. The last picture I paste into my album is an old Polaroid of Wally leaping out of a swimming pool, in a blur of brilliant water, flinging himself into the daylight.
How can this be written? Shouldn’t these sentences simply be smithereened apart, broken in the hurricane?
Thursday night, January 20. Wally’s smiling. I get the Polaroid and ask him to show me that smile again, and he does, the last time he’ll be able to.
Friday, January 21, the last words I’ll write for a month:
Time’s the engine that decks
the world in its beautiful clothes.
And not one, not one is exempt.
Wally’s breathing changes, becomes heavier, regular; breathing’s work now, as if it were the audible sign of some transformative process within. He seems turned in on himself, not speaking; I don’t think he can speak now. I touch him and talk to him. We know it’s time for the morphine, in an eye dropper, on his tongue; perhaps there’s no pain, but if there is he couldn’t tell us, and the opiate will ease the work for him. Rena comes and says good-bye; his eyes are closed when she comes into the room, but he opens the right one, the still-good side of his face, and takes her in. She tells him she hopes he’s not scared, and they spend a long time looking at each other. She says, “Knowing you has been a great gift in my life,” and that she’ll always carry him in her heart. Then she’s quiet, giving him her love. “And then we looked at each other some more,” she told me later, “and I kissed him and wished him a safe and joyful journey, and I left, and I didn’t see him in his body again.”
I call his mother, who’s planning to come Sunday. She comes Saturday morning instead, but by then his eyes are closed. She sits alone with him for a while. He opens his right eye just a tiny bit; we can tell that he sees her. All that afternoon he looks out at us through that little space, but I know he sees and registers; I know that he’s loving us, actively; if I know nothing else about this man, after nearly thirteen years, I know that. So into the line of his vision I bring Thisbe and Portia, and Arden, and Beau, and then I sit there myself, all afternoon, the lamps on, since the house is circled in snow and early winter darkness. The afternoon’s so quiet and deep it seems almost to ring, like chimes, a cold, struck bell. I sit into the evening, when he closes his eyes.
There is an inaudible roaring, a rush beneath the surface of things, beneath the surface of Wally, who has now almost no surface—as if I could see into him, into the great hurrying current, that energy, that forward motion which is life going on.
I was never this close to anyone in my life. His living’s so deep and absolute that it pulls me close to that interior current, so far inside his life. And my own. I know I am going to be more afraid than I have ever been, but right now I am not afraid. I am face to face with the deepest movement in the world, the point of my love’s deepest reality—where he is most himself, even if that self empties out into no one, swift river hurrying into the tumble of rivers, out of individuality, into the great rushing whirlwind of currents.
God moving on the face of the waters.
Suddenly I’m so tired I think I can’t stay awake another minute. Darren comes in—he’s been in and out all day, spelling me, seeing where things are—and says he’ll sit with Wally awhile. I say I’ll sleep on the couch for an hour. I don’t think I’ve been lying down ten minutes when I sit up, wide awake. Darren is in fact on the way to fetch me, but I’d have come on my own. I know it’s time.
I say to Wally, while the breath comes more shallowly, All the love in the world goes with you.
Each breath he draws in goes a little less further down into his body, so easily. He never struggles; there’s no sense of difficulty, no sense of holding on.
Arden stands up, suddenly, moved by what imperative I don’t know, and falls out of the bed. Darren says, That’s just Arden, he’s okay, not wanting anything to steal Wally’s attention from where he is now.
I say, You go easy, babe, go free.
The world seems in absolute suspension, nothing moving anywhere, everything centered.
Go easy, but you go.