Elegy with Double Knot, 2011, 30" × 65"
After Brian has brushed his teeth, after he’s swallowed a fistful of pills, after he’s injected Nupigen into the fraction of fat he can pinch from his belly, he dons a pair of pajamas and says: “I’m ready to get plugged in.” He means he’s ready for me to connect him to a computerized infusion pump called a FloGard. Every night for over a year, a rich, synthetic liquid called paranutrition has been pumped into his bloodstream, fattening every cell. Or so we keep hoping. Infusions were the last treatment left to slow his rapid weight-loss from AIDS.
Brian sits beside me at the edge of our bed, gritting his teeth as he rolls up his sleeve. He’s worried that his PICC line—seven inches of flexible tubing that protrudes from the flesh at the crook of his arm—might catch in the fabric. I’d make a move to help him, but he insists on carrying out this part of the procedure himself, lifting and guiding the sleeve with his free hand, blue eyes alert to the slightest snag. These are perhaps the only moments in a given day when he has the power to protect himself from pain. The moments don’t last long.
When the full length of the PICC line unfurls, its loose end dangles over Brian’s forearm. He’s continued to grow alarmingly thin despite his nightly infusions, and so vascular that his once-submerged veins seem to rise in compliance with the doctors and nurses who extract his blood, a dark-red portent on which they base prognostications and an ever-changing regimen of drugs. Shelves in our kitchen are packed with plastic vials, bottles in every shape and size, foil gel-packs, transdermal patches, and a pill cutter dusted with chalky powder from slicing thousands of tablets in half. On the counter lies a spiral binder filled with Brian’s handwritten notes—an archive of failed therapies complete with dates and annotations, schedules for taking his current medications, and emergency numbers to call just in case. The binder contains a persuasive account of his will to live. I’ve taken a leave from my job writing art criticism to finish a manuscript, but it dims in comparison to Brian’s binder, its dense notations fueled by an urgency I can’t and wouldn’t try to match, its contents growing ever longer and more complex.
• • •
I first considered taking time off when Brian’s primary physician began a gentle but insistent campaign for home infusions. “I have patients who’ve been able to benefit from paranutrition for years,” the doctor told us during a consultation. Right then and there, I should have grasped the finality of his remark, the brick wall of it, but I willed myself to believe that his patients benefited from infusions until they were able to stop the treatment and sustain themselves by eating solid food.
Brian understood the implications from the start. One morning, as he was getting dressed for work, he informed me that he’d decided to take the doctor’s advice. He asked if I’d be willing to learn how to administer the infusions.
“Absolutely,” I said. “Anything.”
“I’ll probably be hooked up to an infusion pump every night for the rest of my life.”
“You mean, ‘for the rest of our lives.’”
“No,” he said. “I mean the rest of mine.”
I’d been sitting in bed, editing my review of a retrospective at LACMA, fiddling with its grammar and syntax, but parsing his remark was the greater challenge.
Brian was changing into a white dress shirt and tan pants, becoming a sartorial blank screen onto which his clients can project whoever they most need their psychotherapist to be. Dressing in those clothes goes a long way in helping him achieve the cool, analytical demeanor that both his occupation and illness require. “I’ve done some research,” he continued, “and at least I can sleep through infusions. My only other choice is to be the guinea pig for an experimental gel that’ll leave painful knots at the injection sites. And the knots won’t go away. I wouldn’t be able to sit at my desk or lie in bed without hurting. I wouldn’t be able to rest. Ever.” And then, perhaps mistaking my silence for acceptance, he announced that he was off to Nordstrom to get his shoes shined before work.
Brian’s decision to have his shoes shined at that particular moment might strike some people as a flight from otherwise bleak and inescapable circumstances—and if so, so what?—but as his meticulous notebook shows, he isn’t one to fool himself about the state of his health. If you ask him how he is, he could (but wouldn’t) give you an answer down to the platelet. It’s not that he takes his illness lightly; he takes it gravely, but continues his routines to whatever extent his strength allows. For most of our twenty-year relationship, Brian has been in perpetual motion. Expending energy left him replenished. His favorite sport was crossing items off a list of things to do.
When I first met Brian at out local gym, his heartiness made me skeptical, but it turned out that he wasn’t just the most genuinely cheerful person I’ve ever known, he’s practically the only cheerful person I’ve ever known. None of my wonderfully complicated and unconventional friends would so much as consider doing “the wave” in a stadium full of people, for example, one of Brian’s favorite things to do. Group behavior fills me with a discomfort I’m afraid to show for fear that I’ll be seen as a spoiler, a nonbelonger, whereas Brian has always loved parades, political rallies, square dances, ice-skating rinks, and other gatherings in which large groups of people move in unison, subordinate parts to a single-mindedly jubilant whole.
Even after he became symptomatic, progressing from HIV to AIDS, he’s rallied quickly after bouts of infection. No sooner do his fevers cool or white count subside than he volunteers to perform the kind of tasks that many people in the peak of health would try to put off, preferably forever. Once, newly recuperated from a bout of neuropathy that numbed his hands and feet, he climbed onto our pitched roof and, against my protests, swept an autumn’s worth of leaves from the rain gutters. There are times I’ve seen him dumbstruck by despair, but despair burns inside him for only so long before it runs its course, restoring him to the ordinary.
But back to the day he asked me to administer the infusions. I was sitting on the bed, the draft of an art review in hand, and when I could finally bring myself to speak, to say something consoling or sympathetic about what was perhaps the last medical option available to prevent him from losing even more weight, this is what came out of my mouth: “There’s a shoe shiner at Nordstrom’s?”
“In the men’s department,” he said. He cinched his tie tightly enough to compensate for the shirt’s roomy collar. He kissed me on the forehead and left the house.
Ever since he tested positive (early in our relationship we discovered we were a sero-divergent couple), Brian has endured medical procedures too numerous to count—too ghoulish to want to count—and has cultivated a dignified, if somewhat reticent, surrender when letting strangers palpate his glands, press their stethoscopes against his chest, and pierce his skin with needles. But as the day of the implant drew near, the prospect of having a catheter fed into in his arm caused an uncharacteristic spike in his anxiety, despite his doctor’s assurances that the procedure would be painless and over in a flash.
Brian and I have always been a lucky couple in that one of us was usually steadfast (him) when the other was fretful (me), and this division of emotional labor suited us well. I’m good at fretting. Better than good. I’m a world-class fretter. I can fret with both hands tied behind my back. I come from a long line of professional fretters who would have no trouble making the association between, say, a drafty room and full-blown pneumonia. I bring to worry a far greater dedication than Brian ever could, and this, I’d like to think, has freed him up to get his bearings, dig in his heels, and remain resolute. With my considerable skill in this area, I’d thus far been able to take at least some of the burden off Brian’s shoulders, and he, in turn, gave me hope for the future by insisting that I worry too much. We’d managed, with this kind of delicate imbalance, to husband each other through several crises.
As the day of the appointment neared, I had to pick up his constitutional slack, so to speak, and I’m pleased to say that I met the challenge head-on, becoming a relatively levelheaded fellow who doled out the kind of comments—Even if getting the implant hurts, which the doctor says it doesn’t, it won’t hurt for long—that usually fell under Brian’s purview.
Playing at having confidence (in other words, having false confidence) led me to believe that I might actually master, or at least achieve a basic grasp of, the necessary steps for giving an infusion. This came as very good news indeed, because if I had to receive an infusion, I’m the last person I’d choose to receive it from. I’ve never, thank goodness, been called upon to staunch a geyser of blood, splint a broken bone, or perform the Heimlich maneuver. Up to that point, my medical experience had been confined to the application of Band-Aids and bags of frozen peas. The fact that Brian asked me to give him infusions struck me as a flaw in his otherwise rational thinking. Worse, giving him infusions would make me, in a definitive and daily way, his caretaker, a word I despised for its notes of dependency and incapacitation. For more than two decades I’d assumed that it was he who took care of me, that he was the dependable one, the organized one, the one who got things done despite being HIV positive, while I spent days hunched over a desk, distracted by language to the point of . . . distraction. If I became the infuser and he the infusee, our time-tested roles would have to be reversed.
My “infusion training session” was scheduled days in advance of the implant, and Brian decided to come along so he could get a better idea of how the treatment worked, and no doubt to see with his own two eyes that I’d learned the procedure forward and back. With her gold bifocals and tailored skirt, the instructor—I’ll call her M—looked “pulled together” as Brian said of the well groomed and self-possessed, a pet expression that never failed to confirm my suspicion that, if a person wasn’t held together by every means possible, they were bound to fall apart. I introduced myself and reached out to shake her hand.
“You’re the partner?” asked M. Her scrutiny was as bright as a searchlight.
“That would be me!” I was too jaunty by half, but the other half couldn’t do a thing about it.
“I’m the patient,” said Brian, “which you probably could tell.”
M opened her briefcase and handed us printed folders whose covers featured an illustration of what I thought was a kite on a string, but on closer examination turned out to be an IV bag trailing a tube. M noticed me squinting at the image. She closed her briefcase and switched off her cell phone. She sighed the sigh of a woman whose work was cut out for her. “You’re prepared to be in charge?” she asked me.
“I realize I must look a little nervous, but please understand that I take this responsibility as seriously as anyone without medical experience can take it. Not that my not having medical experience will be a problem. What I’m saying is, despite my lack of medical experience, I’m ready and willing to learn everything there is to know about giving foolproof infusions.”
“What do you mean by foolproof?” she asked.
Brian and I looked at each other.
“I guess I mean infusions that don’t leak or come loose or whatever else can go wrong when someone does them.”
“So you know about air bubbles?”
“I know what they are, if that’s what you’re asking.”
“It only takes a few millimeters of air to kill a patient. A lethal bubble can slip through the tube and stop the patient’s heart like that.” She snapped her fingers. “The authorities have ways of determining if an air bubble has passed through the filtration system on purpose. I’m obligated by law, and by my own conscience, to make this danger clear to my clients.”
I telepathically urged Brian to say something in my defense.
“Can I have a glass of water?” he asked.
I turned back to M. “I know you don’t know me from Adam and that you’re obligated by law and ethics, etcetera, and I respect you for professionalism, but believe me, there’s no way I’m going to kill him on purpose!”
Her eyes widened.
“Not by accident, either!”
“He won’t,” said Brian, with a little less conviction than I would have wished.
“We’ve been together for over twenty years,” I told M, realizing too late that a twenty-year relationship might seem to her like a reason for foul play instead of against it.
“I’m going to trust you,” M told me. Begrudgingly doesn’t do her tone justice; her trust had to be extracted like a tooth. “You must understand that I’m here not only to instruct, but to assess the suitability of the parties involved.”
“Can I have a glass of water?” Brian asked again.
“Listen,” I said to M, “I think it’s safe to say that if we weren’t suitable to help each other through this, we would have found out by now.”
M paused a moment, taking this in. “That’s what I like to hear.” She seemed pleased by my commitment in the face of opposition. “I feel much more confident now and I hope you do too.”
“Relatively,” I said, “but even under the best circumstances my confidence is clouded by doubt.”
“Bernard,” said Brian.
“She asked me,” I said.
While M prepared her demonstration, laying out the PICC line and its attachments on a small table, I brought Brian a gulp-worth of water in one of those tiny pleated paper cups. He tossed it back and swallowed.
M rolled an IV pole closer. Perched atop it was the FloGard we’d be taking home with us. It emitted a shrill, repeated beep the second M plugged it into the wall. Brian and I winced. Amazingly, M went about her business unbothered. Although the dictionary defines a “beep” as a short burst of sound, that word is as wanting as a referent can get. FloGard is to Beep as Air Horn is to Chirp. Like a baby’s wail, the sound stimulated an involuntary biological response, its pitch able to wrest the attention of anyone within fifty yards. How could a person think or read or relax while that thing was beeping? You certainly couldn’t sleep through it, which was precisely the point; no state of repose, no deep elaborate dream, was safe from its many decibels. A sound like that could penetrate bone. One didn’t need ears to hear it.
“The beep lets you know the machine is on,” said M in a masterstroke of understatement. “During the night, it will also alert you to clogs in the PICC line—we call them occlusions—and other malfunctions in the apparatus. We want the lumen to stay clear at all times . . .”
Brian wedged a question between beeps.
“Lumen,” explained M, “is what we call the inside of the tube. Unusual movements can twist the line, which blocks the lumen and sets off the alarm. You mustn’t bounce on the bed unless you absolutely have to.”
Brian smiled wryly. “My bouncing days are over.”
“I’ll hold him down if he bounces,” I said.
“You gentlemen won’t think it’s funny if you have to wake up ten times a night to turn off the alarm.”
It was difficult for me to absorb what M was saying because every time a sentence left her mouth, a beep blew it to smithereens like a rifle shooting skeet. “The alarm could also go off if Brian gets up in the middle of the night to use the bathroom and accidentally disengages the safety clamp. Brian, make sure you grab the IV stand firmly in the center of the pole when you roll it with you, and always leave some slack in the line.”
“I’ll be able to get out of bed after I’m hooked up?”
She grabbed the IV pole and pushed it from side to side and then in a circle, showing Brian how easy it was to move the unit on its four swiveling wheels.
M pointed to a luminous green plus sign near the touch pad. “This light shows you that the battery is charged. It’ll give you about two hours of reserve power after you unplug it. Just make sure you’re always near an outlet.”
Brian considered the prospect of having to be plugged into a wall socket at night—another limitation to rein him in.
M turned off the FloGard’s alarm. What followed wasn’t silence so much as an agitated vacuum. It took her some time to thumb through the thick folder Brian’s doctor had sent her. Brian had volunteered for the first trial of protease inhibitors at UCLA in the mid-1980s, but his control group, given the highest dosage, became resistant to the new drug instead of reaping its benefits. This lead to an ever more complicated course of alternative drugs, many still in the testing stage. Even M must have found it hard to believe that someone had ingested such large quantities of medication over the years. Brian’s life had been lived by the milligram, the precise titration. And now we were running out of drugs, and drug combinations, to prolong his life.
When M was finished, she removed her glasses to get a better look at us, revealing a permanent furrow the bridge of her glasses had hidden. “Twenty years,” she said.
“What?” asked Brian.
“That’s a long time to know you’re infected. Longer than I’ve lived in America. When I first came to the States, my parents warned me that America was a place forsaken. I was told that few people prayed to Allah. But it looked to me like people were praying all the time, day and night. Of course, it wasn’t the kind of prayer I thought.”
“What was it?” asked Brian.
“Cell phones,” she said.
“You heard people praying over the phone?”
“This was before I had a cell myself,” M continued. “I saw men and women everywhere lifting their hands to their ears just as I had growing up in Iran, and I thought, it’s qiyam, the posture taken when one decides to pray. A sign of readiness. Soon I understood my mistake, but I still like to see it as I used to: prayer everywhere. Every one of these people is giving a sign of readiness whether they believe in prayer or not. Call and answer, call and answer. How else can a man or a woman know God? We’re making way for prayer even if what we’re making is appointments.”
She gathered herself up, adjusted her glasses, having a little trouble, it seemed, resuming her impartial role. “Brian,” she said, “I don’t mean to pry, but there’s something I have to ask you before we begin. Is there a secret to your longevity?”
“Yes,” he told her. “I’d rather not die.”
• • •
By now I have the procedure down pat. I rock the refrigerated bag of paranutrition back and forth to break up the “particulate matter,” then hang it from the top of the IV pole. I scrub my hands with germicidal soap and rinse them in the hottest water I can stand, then force my fingers into a pair of purple Safeskin examination gloves, clenching my fists a few times to loosen the fit. The gloves are numbing; when I touch Brian’s outstretched arm, the touch conveys few sensory details, as if his body itself, and not the sensation in my fingertips, has grown fainter.
Thin as he is, it’s hard for me to think of him as the host to a virus, and yet I know he’s inhabited, yielding against his will to a microscopic force that makes him appear less and less like the young man I met more than two decades ago, his body once agile, thoughtless in its health, responsive to pleasure instead of pain. Tonight he wears a polar fleece jacket over a sweatshirt and thermal long johns beneath his jeans. A wool ski cap covers his head. Each foot is padded by several pairs of socks. All these layers give him a temporary density; he’s robust from clothes. I’d probably find some comfort in his bulky appearance if it weren’t for the fact that it’s summer in Los Angeles, the heater in our bedroom cranked up full-blast. Since he barely possesses any insulating fat, Brian shivers, cold to the bone.
• • •
When people ask Brian why he’d moved to Los Angeles from his tiny boyhood town in Canada, he routinely tells strangers that, after graduate school, he couldn’t wait to flee the brutal winters. Climate was only a small part of the reason he immigrated.
From an early age, Brian considered himself at odds with small-town convention, despite his affection for the scale of provincial life, its consistency and politeness. He might never have thought of himself a budding renegade if it hadn’t been for the plain, socially unacceptable fact that he and the town’s paper boy engaged in sex nearly every day for six years, from the ages of ten to fifteen. Because a single route covered the entire town, the paperboy assumed the prestige and civic responsibility of a government official.
Once Paper Boy’s rounds were complete, the news delivered, his bike lightened, he wheeled up to an abandoned barn on the outskirts of town, where Brian just happened to be passing by. The boys feigned surprise each time they crossed paths, as if brought there by accident rather than plan. Wanting to meet would make them homosexuals, whereas so-called chance encounters allowed them to remain nothing more unusual than two classmates who barely exchanged a glance at school. Never mind that their rendezvous was repeated day after day, week after week, year after year. The ritual of surprise—“Hey, aren’t you in my class?” or “What’re you doing here?”—served to erase their previous meetings, a willed amnesia that delivered them from sin. Since their preferred method of reaching orgasm consisted of rubbing up against each other while fully clothed and ejaculating in their pants, Brian refers to their assignations as “frottage on tap.” The two of them rolled around—where else but in the hay—and kept rolling. Perpetual motion prevented either from assuming the supine position, which would have cast that boy as the woman of the couple, or, more accurately given the longevity of their relationship, as the wife. No time to stop and hold the other’s gaze. No time to reflect. The tacit rules didn’t permit overtly homosexual acts—they refrained from touching the other’s penis, nipples, testicles, ass. Specific predilections were diffused into a broad abstraction of contact. Neither did the rules permit overtly tender acts—kissing was out of the question, a caress of the cheek too fraught with feeling. Paper Boy insisted that what happened between them wasn’t, strictly speaking, sex. Brian thoroughly agreed—a ploy to keep his lover coming back for more of what wasn’t sex.
And so it continued, dependable, unwavering, a bond that, in very different circumstances, would go by the name of fidelity. Until the age of fifteen. It was Paper Boy’s idea to go on a double date with two girls of his choosing, a boyish, artistically inclined girl for Brian, and a precocious, outgoing redhead for himself. Brian had never been on an official date, and the prospect of fraternizing with girls he’d never met, girls from another, larger town—prissy sophisticates, he’d assumed—made him apprehensive. Still worse was the idea of sharing this initiation with the boy whose companionship had been relegated to the sunless, dusty confines of a barn. Why make their friendship public now? What if their secret suddenly escaped like a bee from a jar?
When the night finally arrived, however, the girls’ good manners and skill at small talk—a social currency that Brian appreciated even back then—put him at ease. Learner’s permit hot in his pocket, Paper Boy borrowed his father’s car and aimed the foursome toward the only Chinese restaurant within a fifty-mile radius. For much of the drive, he attempted to impress the girls with tales of his days on the paper route.
“You don’t still deliver papers, do you?” the redhead asked.
Realizing he’d taken the wrong tack, Paper Boy shifted the spotlight to his Labrador Blackie, sure that stories of a loyal dog would soften them up. The girls listened politely, nodded in all the appropriate places, then said they each had a darling cat and that they identified themselves in no uncertain terms as “cat people,” an affinity that stalled the conversation.
Rushing in to fill the gap, Brian inquired after their pets, whose names were Kitty-Sticks and Professor Jingle. He earned points with the girls by referring to the pets by name; most boys, they told him, were too embarrassed to say the names aloud and tried to change the subject. “Cowards!” scoffed the redhead. “Afraid of the feline species,” said the other. That Brian had demonstrated his male prowess by uttering silly cat names came as a stunning surprise to say the least. Masculinity loosened its starched collar which, up until that moment, had restricted his breathing and pinched his neck. He went on to tantalize the girls with local gossip. He told them jokes without flubbing the punch lines. He grew emboldened to ask about their hairstyles and clothes with the ease of a boy who has nothing to lose. Soon the girls needed to remind themselves that a second boy had come on the date; too polite to ignore the driver of the car altogether, they tried to solicit his opinion about the recent popularity of powder blue, the newest shade in women’s fashion and home decor. Paper boy shrugged. “Don’t know about that kind of stuff.” He rolled down the widow and executed a hand signal with studied nonchalance. This merely forced the talkers to shout above the wind.
“I bet powder blue is hard to keep clean,” said Brian.
“Try wearing pumps that color!” exclaimed the redhead.
Brian shook his head in commiseration.
Leafy trees flicked by in the headlights. “You’re simpatico,” observed Brian’s date.
“He is,” confirmed the redhead.
“No kidding,” said the driver, an edge in his voice.
The girls seemed not to notice. Or not to want to. Their eyes glittered in the darkness of the car. Despite their maturity, they may have mistaken their sisterly regard toward Brian for the first stirrings of love. In any case, the night was a triumph for Brian, for he’d won the lion’s share of attention from two amusing, worldly girls (as he’d come to think of them) without having to stiffen his wrists or dredge up a phony baritone every time he opened his mouth. The girls both planted a kiss on Brian’s lips before shaking Paper boy’s hand good night.
• • •
When I press Start, milky droplets are pumped through the FloGard’s drip chamber, then along the PICC line, and finally through the shunt in Brian’s arm. He lies back on a stack of pillows and closes his eyes. Nupigen stimulates the growth of white blood cells and this makes his bones sensate in a way he never thought possible; he can feel the marrow aching within them. Painkillers don’t ease the discomfort so much as they cause a foggy resignation that passes for repose. Still, he feels lucky that “the whole rigmarole,” as he calls it, doesn’t keep him from a good night’s sleep. Most nights, he’s out by eight o’clock and I slip into bed beside him. But the deeper Brian sinks toward sleep—his hands unclenching, jaw going lax—the more wary I become. During my waking hours, I think of myself as a reasonably protective person, but at night this instinct is magnified, even if he’s breathing peacefully beside me. My hairs bristle and muscles tense at the slightest vibration. I could spring across the room if I had to. I could lift the bed and carry him to safety. I’m at the ready, though I don’t know for what.
As I lie in bed and listen, sounds reach me with piercing clarity and in nearly tangible shapes and patterns. Hip-hop throbs from a driver’s moon roof, its trail of rubbery bass notes bouncing off the asphalt. A helicopter passes overhead and rips the sky into tattered black rags. The infusion pump isn’t loud, exactly, but in the process of generating each precisely measured drip, it repeatedly makes what the layperson would hear as a single sound, whereas the exhausted aficionado hears a bedeviling sequence of sounds. It begins with a metallic tick. Next comes a deepening hum as a single ivory bead expands at the top of the drip chamber, growing too heavy to support its own weight. And just before it falls, the pumping cycle starts all over again, its noise masking the inevitable plink or plop, or whatever word would best describe the impact.
I’ve lost track of the number of nights I’ve lain here and made a pact with myself to ignore the damn drip, only to go right on thinking about it to the exclusion of everything else. I can’t be the only person on Earth who’d get a little fixated on a dripping bag of milky liquid suspended in the air beside his bed. The droplets might as well be falling on my forehead; both thinking about them and trying not to think about them are a form of Chinese water torture. Every drop feeds and hydrates Brian. Every drop perpetuates a world in which he’s alive and sleeping beside me. Every drop is deep enough to drown in.
I used to read for hours every night until I fell sleep. In the act of reading, I routinely met the writer halfway by allowing myself to be carried off by the forward momentum of his or her sentences, a voluntary surrender that, until Brian began infusions, was the very abandon I sought in books. Now the merest hint of immersion in a text, the slightest sense that I’ve lowered my guard, gives me a start; I must stay alert. I’ve developed a new and admittedly superstitious belief that I can’t allow my attention to lapse, that I have to keep track of what happens to Brian, and therefore to us, as it’s happening. The narrative instincts I’ve developed as a reader and a writer are now spent making sense of the present, however tentative and uncomprehending that sense might be. A narrative contains us, binds us to a single, ongoing story. Every night I review the day, selecting stray details, mulling them over as if to write them down, all the while knowing that the details remembered one day are destined to be forgotten the next, erased by a slew of new details that can’t be foreseen—sudden nausea that will not stop, the angry, transient rash. Every night I attempt to save our place, as if in a book. We’re drawing toward an end that’s inevitable on one hand and impossible to imagine on the other, but until we get there—how and when will we get there?—I can’t allow a lapse between scenes, can’t lose the continuity. All the details have to add up, each effect tied to a probable cause, each action in keeping with character. Any less will lead to incoherence.
I understand, intellectually at least, that my fear of losing track of the narrative fuels my desperate wish to control it. For the truth is, I don’t want to nurse Brian. I don’t want to make his illness easier to bear. What I want to do is save him. There’s no way to say this without sounding deluded, or foolish, or like a man who’s building a case for the depth of his love, or worse, to win pity for its imminent loss. But there’s no other way to say it, either: I want to save him. Even though Brian has warned me that his body will soon belong to the virus, robbing him of the drive to live, the sheer futility of my wish makes it all the stronger. I can’t ignore, or lessen, or shed it.
Even if I could give myself over to the parallel life of a book, the sound of the pump distracts me from language, goads me again and again into the present. Its churning disrupts the very air. Reminds me that it’s late in every sense. Proves that the world will rattle on without us.
When I can’t stand listening a moment longer, I get out of bed and go watch television in the next room. And just as I settle back and relax, just as vigilance loosens its grip, I notice that the sound coming from the TV is more vibrant and lifelike than ever before. How can I be expected to follow, say, the grizzly re-creation of an unsolved murder or close-ups of the latest plastic-surgery procedure when I’m busy pivoting my head at different angles to determine whether the TV’s enhanced audio is due to the room’s acoustics, the set itself, or my own ears?
Insomnia, it seems, is spending the night. A couple of my friends wouldn’t mind a phone call even at this hour, but I don’t want to wake them. Their kindness is a fund I can draw from when I’ll need it most, when “after” happens. And so I find myself guarding not only Brian’s sleep, but my friends’ sleep as well. This is an illusory duty, I know, but it lends a purpose to long and sleepless hours. I turn off the set and head back to bed.
Late at night, unable to concentrate on books or television, cut off from conversation, it’s impossible to escape the vise of life-as-I-know-it and lose myself in another story. The only story I know is the one in which Brian is dying. Our twenty-year history has a beginning and a middle, of course, but they’ve been eclipsed by the sights and sounds of these numbered days. The past is an unimaginable condition in which we possessed a future. It’s as if we’d met so we could be together when he dies, paid the mortgage so we could be together when he dies, sustained ourselves with food and love and hard work so we’d one day come to the realization that everything up to this point was a prologue. The story has started here, now, when time is finite.
• • •
Brian loses language one morning just after we wake up. We were having one of those groggy conversations that exist as a kind of domestic white noise in the lives of longtime couples; one is neither listening to, nor avoiding, the other. He meant to say that he’d be home early from work that afternoon—his disability policy allowed him to see three clients a week and, as frail as he was, he wanted to feel useful—but what came out of his mouth wasn’t the word “home.” Nor a synonym. Nor anto-nym. Nor word with a connotation of shelter. The wrong word—“brush”—simply falls into place, as hard and inarguable as a dropped rock.
Brian tries the word again. His brow furrows with effort and fear. He wills his lips to move in such a way that the word he’d intended might take shape. He marshals all he has—all his energy and intelligence—to push it out of his mouth. To rid himself of the need to say it.
“Oh!” I cry. If only it had been an Oh of understanding—I see what you mean—rather than an Oh of alarm.
And so his forgetting begins.
Tests confirm that the virus has crossed the blood/brain barrier, breaching the otherwise impassable junctions between brain cells.
Words go. Then phrases. Then reasons to speak.
Poised at the top of the staircase, he balks and teeters and his body seems to ask if a staircase is flat.
Then comes a night when he forgets how to undress for bed. The order of what’s taken off and why. He rallies the motion of his slender bones and tugs at buttons, flustered and embarrassed when I walk into the bedroom. I sit at his feet and untie his laces. I remove his shoes, leaving the layers of thick athletic socks he requires for extra insulation in bed. He steadies himself by grabbing onto the IV pole when I can reach up to unbuckle his belt and pull his jeans toward his ankles. I say, “De-pantsing you is the only fun part of this whole thing.”
“Right,” he says, his skepticism mixed with pleasure. Our erotic life may be composed solely of innuendo, but complimenting a man whose body betrays him day after day has given me, if not the satisfaction of sex, then at least the satisfaction of discovering innuendo where none would ordinarily exist. I’m not simply praising him out of long habit. This is not appreciation for the man I remember. My ardor exists in the present tense, though its object, and its terms of expression, have changed so dramatically that I have to remind myself that what I feel is different from pity, though there’s pity in it, too. “Beauty plus pity,” said Vladimir Nabokov, “that is the closest we can come to a definition of art. Where there is beauty there is pity, for beauty must die: beauty always dies, the manner dies with the matter, the world dies with the individual.”
This quote is one of the talismans I hold close, reminding me that even death can be turned on the lathe of imagination and polished into a memorable phrase. I find myself depending on the words of others because I have so few of my own. If it weren’t for their words, I’d have to settle for the platitudes that occur to me reflexively now, bringing the added defeat of having to resort to stale phrases because I don’t have the wherewithal to invent my own. That Brian will die has become a fact so immense, I fear it will obliterate not only him, but the words I use to define our life together, and therefore the world as I know it. It’s my death too, and the pact I’ve entered, though not as Shakespearean as vowing to die with him, is to follow him toward death as far as I can go.
Brian steps out of the denim one leg at a time, as if from a dark blue pool. Beneath his jeans, the waffled fabric of thermal long johns cling to legs so thin they hardly look capable of supporting his torso. After he lies flat I cover him up to his chin with an electric blanket, the dial set to High.
I used to wonder what I would do for sexual gratification if and when Brian became too ill. It never occurred to me that I’d be too depleted by his illness to want sex myself—the two of us united, finally, by eroticism’s opposite: the explicit stages of physical disintegration that have taken place in our bedroom, in our bed. There’s an even greater, unexpected, sorrow than knowing he no longer desires me: knowing he desires no one at all. Yearning fails along with the body. The body, as it fails, yearns only for its health. And then, perhaps, not even that.
When I grab his jeans off the floor and begin to fold them, proportion goes awry. My hands appear huge against the denim waistband. Pant legs hang, thin as ribbons. Seeing my bafflement from across the room he says, “Nordstrom’s. I had to buy pants in the boys’ department.”
Later that night, as I lie there and listen to bead after ivory bead falling through the drip chamber, Brian stirs awake and takes me in. For a moment there’s nothing but the hum of the pump. Without question or preface he says, “This kind of thing is harder for the person who has to watch.”
This kind of thing.
I say, not unkindly, “Do you have to be so decent?” By this time I’ve entered a new universe where I’m stung by his offers of comfort, which only remind me how much I’d need his presence to survive his death.
“Sorry,” he says, and before I can weigh his intonation—is he apologizing for his decency or his illness?—he falls back asleep, whereas I remain awake for hours. In the time-lapse of my imagination, I picture him wasting away until he’s little more than a strand of himself, as white and lifeless as a length of thread. This image visits me repeatedly while I hold a book and scan the same sentence over and over, unable to take it in. Literary representations of the world beyond this room are never as urgent as the world within it, a world where the air is close and overheated, dense with milky light, with emanations from our bowels and our lungs and the acrid odor of his body striving, even at rest, to stay alive. The recurring image of Brian’s diminishment is also, I’m ashamed to admit, a wish for his absence to be realized rather than impending, a wish for everything that has been protracted and incremental about his illness to be hastened, accomplished, over at last, the advent of his death transformed into something as ordinary as a loose thread, as easy for me to break free of. I listen to his breathing, firmly tethered to the last days of his life.
• • •
After Brian’s death, I waited the requisite twelve months recommended by grief counselors before making any major decisions. And then I hastily sold our house and moved from place to place to place, but I stayed inside that room for years. Breathed its cubic feet of air. Exhaled its cubic feet of air and breathed them in again. To this day, I’d be willing to wager that, wherever I happen to find myself, I could pace off the boundaries of our former bedroom, accurate within an inch.
As Brian was dying, I searched his face for a final vestige of what was recognizably him, and the part of him I recognized was inseparable from his death. His muscles cramped and his body heaved, and I could have sworn he was writhing in reverse, the opposite of labor pains. Fists clenched, head thrown back, his body retracted who he had been, his bones and muscles taking it back. There were jagged, unscalable peaks of breath. His eyes grew opaque in a matter of hours, their depth slowly rising to the surface until there was nothing more than surface, each blue iris an unseeing skin. Before he was gone, I asked him to remember me. Asked aloud. For exactly as long as it took me to ask, I believed I was being rational, believed my request could somehow be met. And then I lurched at my misunderstanding—I’d been lying beside him and I bolted upright—hoping he hadn’t heard what I’d said, or if he had, could not understand me. I’d asked for the last thing he couldn’t give. It was as if the words themselves had left him empty. As if the words themselves had undone us. The selfish, dismantling patter of those words. What was left to say after that?
In the years following Brian’s death, I could barely read or write. It was as if I’d finally succumbed to the accumulated weights of the Speech Regulator I’d made in art school. My tongue went as still as the tongue I’d once seen affixed to a wall, collecting dust. I left my job as a reviewer and took another job that didn’t require three thousand words per month. Didn’t require that I look at art and expect the slightest consolation. I flatly refused to be consoled. Only my refusal was absolute. I settled into the petulance of grieving; I didn’t have language and didn’t want it. Let aphasia be contagious. Let the world be swallowed by silence. Let every page and every work of art revert to its inborn blankness.
• • •
If it was true that, in the aftermath of Brian’s death, I thought of myself a man bereft, I slowly began to understand that I was, in equal measure, replete with grief, brimming with it. Grief became my provision, my hidden reserve. Even the most stubborn among grievers may begin to know the plentitude of loss rather than its emptiness. Memory is a form of visitation; who and what is gone assumes a presence, however brief, however one wishes it otherwise.
This revision of my mourner’s outlook, of my widow’s-eye-view of the world, may have happened gradually, but my experience of it couldn’t have seemed more sudden. I was scanning the magazine rack at my local supermarket—the supermarket, site of so much boyhood inspiration. I was about to do my grocery shopping, a necessary but vaguely embarrassing task in which my sorry state of bachelorhood was made clear, I feared, to all who glanced into my cart: the scant fresh produce, the boxes of individual servings, the frozen food glinting with crystals of ice, and one or two illicit foods—red licorice, barbecued chips—thrown in to compensate for the nights I spent in bed with my laptop, searching for dates with interesting, attractive men, or later those same nights when lonliness set in, for hook-ups with uninteresting men who were passably attractive by somebody’s standards, if not by mine, and who didn’t seem crazy or tweaked on meth.
It was just before 5 p.m. and the supermarket was crowded with commuters on their way home. Harried shoppers yanked at the handles of nested carts, prying them apart with civilized violence. Beside the magazine rack, a woman in a neon-pink tracksuit dumped bags of loose change into the Coinstar, her money tallied up. I was about to thumb through a recent issue of the magazine for which I’d once written art reviews when I noticed that someone had returned a copy of Boating magazine to the shelf, but had placed it upside down. On the cover was a luxury cruiser whose white fiberglass hull could have been a canopy suspended over the cabin. Higher still, a green, unbreathable body of water replaced the air. A figure on the deck waved toward the camera but, turned on his head, he appeared to be diving into the sky, about to break through its cloudless blue surface before he disappeared. I thought: a boat seen upside down is capsized. A man on a boat seen upside down is abandoning ship, not waving hello to someone on shore, but waving good-bye. This visual inversion was as concise an embodiment of loss as anything I’d ever seen, an accidental elegy composed of a single image. I stood there and stared. A flood of visual possibility pressed in at me from all sides, just as it had back in my junior high school library when Life magazine had lain open before me, the shock of Pop on its glossy pages.
That night I searched the Internet for images of ships—tankers, cutlasses, sailboats, ferries, speedboats, dinghies. These keywords yielded everything from amateur oil paintings to shipbuilders’ blueprints, from Polaroid snapshots to etchings in the archives of marine historical societies. I conducted my search without a single theory, a lapse that would have been inexcusable in art school. I did, however, set some rules for myself: (1) Works of fine art were dismissed out of hand; I wanted to immerse myself in the Internet’s nearly infinite dross. (2) No image could be copyrighted; all of them had to readily accessible, and I avoided sites that sold stock downloads. (3) I aimed for Warhol’s pre-postmodern tolerance, giving every image due consideration, whether they were hazy or high-resolution, illustrative or photographic, vintage or digital. I’d embarked on a search in the broadest, most existential sense, without precisely knowing why, or what it was I hoped to find. Wasn’t it the artist’s duty, I’d wondered as a boy, to make something from nothing for the rest of his life? I dragged dozens of JPEGS onto my desktop as though hoarding them after a famine.
If I tried to remain open-minded while gathering JPEGS, selectivity kicked in when I finally deliberated over which ones to print. The glut of the Internet, I wanted to believe, could be winnowed down to a small evocative handful of images, which is to say that I gravitated toward pictures of ships I wanted to stare at long after my searching stopped. The three ships chosen from dozens were then printed out on sheets of typing paper, paper I’d bought for drafts of a book I hadn’t worked on since Brian had died. When I turned the vessels upside down, the sea on which they sailed—placid or roiling, opaque or transparent—rose up to engulf them, about to bear down, as oceanic as grief itself. Yet grief was constrained to the size of a page. I could examine it from various angles, arrange it in different configurations, could play with it freely, even if my play was grave. “Both art and life,” said artist Walter De Maria, “are a matter of life and death.”
Back at the laptop, I entered associations with the word “capsize” into the search-field: Shipwreck, maelstrom, drowning, flotsam. Grid after grid of images appeared. It was the kind of instantaneous conjuring that had been, for me, conceptual art’s greatest promise. I recalled Lyn Horton plumbing her thesaurus for the synonyms of “inconsequential,” the sum of the English language held in her sights like a far horizon.
Associations rippled outward. I Googled home aquariums and was rewarded with a JPEG of swimming iridescent fish like a string of Japanese lanterns. Sea monster brought me to a murky undersea photograph of a just-discovered species of squid, their bodies as pale and diaphanous as the half-materialized ghosts in old spirit photographs, the ectoplasm of the long departed flowing out of a medium’s mouth. Under Deep sea diver, two men in bulky, archaic diving suits posed with their arms around each other before being lowered into the drink, connected to the living by nothing but the thin umbilicus of a shared air hose; behind the fogged oculus of their helmets were faces as vague as the faces of men I barely remembered from the first wave of AIDS, gone now for decades. Vortex led to a series of black-and-white spirals whose convolutions swept the eye inward, producing the kind of dizziness that Victorians called a “sinking spell.” Waterspout brought me to hardware stores with their shining array of bronze and silver faucets. A glass of purified water looked transparent and prim and wholly contained, but I realized that, once it was printed and turned upside down, the contents would threaten to spill into a puddle whose shape depended, like a bucket of Jackson Pollock’s paint, on gravity and chance.
A veteran insomniac, I spent the better part of a night arranging and rearranging a small handful of found images. They served as words in a vast language—the givens one must choose from if one hopes to speak—and I was convinced that, if I ordered them according to some instinctive syntax, they’d form the visual equivalent of a sentence. Not just any sentence; I was holding out for a sentence that seemed inevitable; change one word and you jettison sense. I invoked the names of poets I’d read and revered in college—Elizabeth Bishop, Sylvia Plath—and also the names of the great collagists—Kurt Schwitters, Max Ernst—with a timidity verging on superstition; as always, I wanted my mentors to oversee me and also to leave me to my own devices.
I didn’t know then that I’d continue making art for years to come. I was picking up where I’d left off in college, but without waving the banner of avant-gardism as fervently as I had back in the 1970s. That particular set of cutting-edge aesthetics, the very idea of an avant-garde, had aged along with everything else. In the living room of the third house I’d lived in since Brian’s death, I sat on the floor, determined to stay there until some cohesive meaning emerged, a lament becoming visible like writing on a tie.
Elegy with Double Knot, 2011, 30" × 65"