The diagnosis was not immediately devastating. In fact, Henry felt something like enthusiasm rush through him. It’s really happening, he thought. He was sitting in a light brown leather armchair on the visiting side of a dark brown desk. On the home side hovered a neurologist charged with delivering the news before running off to keep an appointment to play squash at Rittenhouse Square. Henry knew about the squash because he’d been left alone in the office for several long minutes and found the event scheduled in a spiral-bound, black-leather appointment book situated dead center on the otherwise empty desk. The light in the room was both warm and masculine. It seemed as if fox hunters might enter any moment and shelve their muskets. A desk lamp glowed green, its glass shade stirring in Henry a long-forgotten memory of his father’s tackle box sparkling with fishing lures of a thousand hues, and also less distant memories of the green-metal plaque hung crookedly in his graduate school adviser’s office, announcing to the brilliant dullards pursuing the PhD in Philosophy that across from them sat a man who, despite his complete lack of social intelligence and rank breath, had been recognized by other earthly misfits for his esoteric contributions to the life of the mind. “There are a lot of new medications,” the doctor was saying. “We might be able to slow it down a bit. You could live five years maybe.” Janet should be here for this, he thought. And then again: It’s really happening.
He knew there were important questions to ask. He remembered the movie where the man who gave his disease its common pseudonym tells a stadium full of people that he considers himself the luckiest man who ever lived. Henry didn’t feel lucky. He also didn’t feel unlucky. Two nights ago he’d made love to his ex-wife. They had not been together in nearly five years, but it had been so familiar and sweet and true. He could still smell traces of her sweat. He was fifty-two years old and it was really happening.
“This is hardly the end,” the neurologist with the squash appointment was saying. “But for now I’d like to set you up with some counseling. There are lots of support groups and some experimental treatments. Some studies. Lots of resources. You won’t have to go through this alone.” There was a framed print behind the doctor, over his (i.e., the doctor’s) left shoulder. It showed a ballerina seated on a bench, head bowed, beside an austere-looking woman dressed in black. It seemed so clearly to Henry to be a painting of Death, which was maybe not the most thoughtful or auspicious choice for an office where news such as the news he was currently receiving was delivered with some regularity by invincible medicine-men posing as ordinary humans, who inflicted their practiced sympathies upon whatever ailing meat-bag was next destined to perish, unable to disguise their need to get out into the sunshine and play some fucking squash already. Henry was suddenly sweating a lot. It poured from his hairline. It soaked his armpits. The numbness in his left leg suddenly felt like a living ecosystem. But what was he supposed to think? The doctor made a supreme effort to appear patient but his body was wound like a spring. It was overcast outside, Henry knew from the muted light contained within the darkly patterned curtains. It’s really happening. He’d been considering his own inevitable death since he was a small boy. It had always seemed to be hauling him toward itself, as if he were a wrecked truck at the hook-end of a winch. Why was he less terrified now than at any other point?
Janet moved back in. It was like they’d never split up. The kids—young women now, both of them—were ecstatic and behaved as if this were the reunion everyone had wanted and now sweet life could resume in its sweet way. Henry insisted that the children be tested and pretended at enormous relief when they showed no genetic predisposition for the disease, though in reality some part of him had hoped they would. It was the same part that rooted for extremely high death counts in the wake of natural disasters. The part that for whatever reason wanted Death to spread its fucking wings already and show what it was really capable of. But no, no, of course he was happy the girls would not suffer in the way he was about to suffer. (They would suffer in their own perfect ways.) Both had been unconscionable accidents but without them his mostly meaningless life would have been entirely meaningless, which when he wasn’t in the business of reducing his feelings to chemical exchanges in a brain that wanted only to continue thinking and cared nothing for forces outside its own electrical skull-box, he recognized as what the poets called “love.” (Was it any wonder Janet had left him?) He and Janet talked in bits and shards about certain necessities. There’d be a wheelchair at some point, though for now he could walk with a cane. “You’re a distinguished gentleman,” she said. He decided he would keep teaching until he couldn’t anymore. He vowed to remain rational. He began telling friends and family, with a certain desperation he despised hearing in his own voice, that the moment he began praying or talking in even vaguely religious terms was the moment he had taken leave of them; they should take this rational self speaking to them here and now as the true measure of his stance on a hostile and unforgiving universe, and ignore whatever gibberish-spouting human emerged from the pitted bowels of a disease that had reduced men greater than himself to mystics.
Janet cried a lot at night and she held on to him tightly as if he knew the way through a darkness that led only into deeper darkness. They would fail to navigate it just as they had all the other ostensibly shared challenges of life and marriage. (Joseph Conrad: “We each die as we have lived: alone.”) It was difficult to believe that this warmhearted, pliant Janet was the same woman who had withheld sex from him for years at a time and allowed her resentments to fester to the point that she’d become more wound than woman. But just as he had to admit that his feelings for his children were something, so too did he realize that Janet was the only real adventure he’d ever had and that yes, he loved her, he’d always loved her, and now for the first time he found himself trying to express that factoid via the slippery English language. But feelings continued to embarrass him. He read her a poem one night, awkwardly. (Philip Larkin. In times that nothing stood / but worsened, or grew strange / there was one constant good: / she did not change.) They planned a last trip together that they did not call a last trip, to Italy, Henry’s ancestral homeland. He was expected to live another three or four years and the disease hadn’t progressed much since the diagnosis, but then it flared rapidly through his nervous system so that in the month between planning the trip and the embarkation date his arms had become completely paralyzed and he could walk only in a Frankenstein-like shuffle, half-bent at the waist with his arms swinging like enormous sausages, and so the trip was “postponed” and he took a “leave of absence” from the University and his medications were doubled and then tripled and then quadrupled all to little avail and then the respirator was brought in and attached to the wheelchair and he donned the little skull-cap from whose sides the nostril-inhalers dangled and plans were made for when he could no longer swallow food which they hoped was still many months away. It was, in a manner of speaking, on.
Around this time he began having the dream. He was dragging a Hefty bag stuffed with the gore of a body he had hacked to pieces through a labyrinth of unlit alleyways, the bag hissing loudly against the cobbled pavement and the liquid collecting at its bottom as he beseeched the plastic please don’t break with sweat pouring from him and a bone-white moon gleaming coldly until finally he arrived at a destination unknown to his waking self and heaved the whole sloshing grotesquery into a black dumpster before noticing a homeless man against a wall, his legs twitching on the cobblestones as he watched Henry unburden himself of his freight. The homeless man was touched at his edges by the hot pink light of a neon sign that protruded from the building above him, its cursive letters spelling a word that Henry couldn’t quite make out and that didn’t seem to be English. He would move through the generally mundane remainder of the dream terrified that his crime would be discovered, a terror that took as its focal point the possibility of imprisonment or vengeance but that contained within itself the other, more abstract repercussions that all pathological liars and frauds haul on their backs every hour of every day. The dream felt familiar in a way unknown to him from his five decades of dreaming and he began to convince himself that it was no fiction, that he had been suppressing or repressing or sublimating (or whatever the clinical term might be) the memory of this very real event for these many years, which maybe this accounted for his unease with the so-called easy things in life, his tendency to shy from crowds and from questions, the trepidation he’d always felt in the most ordinary circumstances. He would wake with the buzz of the hacksaw still stinging in his palms before remembering that in fact he had no feeling in his hands and that he was now mostly paralyzed. That he was helpless and supine. That he was being force-fed his breath. That he would never again lift a spoon to his mouth or tie a shoe or caress a cat’s soft fur.
Would you like to go for a walk today?
Would you like some coffee?
In the mornings Janet wheeled him into their glass sun room and he searched the woods that cinctured their property for foraging deer, the light on his face igniting itch-circuitry throughout his body which he endured without complaining or asking to be moved because at least the itchiness was a feeling. The clouds drifted through a sky utterly devoid of meaning or message as the disease sparked and sizzled, as if his ganglia were long fuses each leading toward the gunpowder keg of his heart, and Janet whistled in the next room as she loaded the coffee machine and moved through a private world of remembrance and anticipation and fear and wanting before returning to him with the happy face that sustained her.
Would you like to take a walk today?
Would you like me to turn the pillow?
The support groups did not help, and although he continued to comment in online forums (using the voice-recognition software Janet had installed on his chair-mounted laptop) it was mostly for the macabre or even mean-spirited purpose of reminding his fellow sufferers that they were going to die soon and nothing could be done about it and that oblivion uncaringly awaited them. It made him feel better, which in that way he supposed the support groups did help. Visits from his children were sort of terrible. Their eyes were dolls’ eyes. All their binary switches were turned to “off.” This detachment was necessary precisely because they loved him, and he knew that, but still, he felt his heart crawl up into a tight ball and he verged on sobbing with every word. He loved them! But love… what was love, anyway? Just another bit of chemical necromancy to instill procreative impulses or safeguard the valuable genes of the young. His drugs were also not helping, or if they were it was in a completely abstract way that meant little to him as he slowly withdrew into the cave from which he would never emerge. He would peer from that awesome darkness at a world he could no longer access. “The majority of patients die peaceful deaths,” the doctors told him. But what did they know? A man lies propped up and immobile in a bed, completely paralyzed, “locked in” as the nomenclature had it. His face is frozen in something like a smile. The respirators breathe for him. What hell might that man endure inside a mind still humming along and unable to escape itself? What appeared to be “a peaceful death” could in fact be an unimaginable torture far worse than anything promised by the various vacuous theologies he’d long mocked for their primitivism.
But of course he did start to pray.
In the sun room, searching the woods for deer, walls of glass like a second cage (his body was the first one), time dropping its iron stanchions down around him with accelerating frequency, he prayed to Jesus to have mercy on his soul, though to his (self-assigned) credit a second voice always whispered in parallel to the prayer, Henry Henry puddin’ pie, kissed the girls and made them cry. And anyway, he didn’t tell anyone about the praying, though he could see that Janet’s spirits were buoyed when he would speak of death as the “last adventure” or as a “destination,” which was a far cry from his more practiced rhetoric of oblivion, total darkness, the nothing nothings (Heidegger), or whatever other English words sought to approximate a non-state.
Would you like some coffee?
Would you like to go for a walk today?
Around this epoch in his timeline of deterioration, he discovered on the Internet something called an Exit Bag. You could fashion one yourself (or a person whose arms worked could, anyway) from a tank of helium, a short stretch of hose, some tape, and an airtight bag with a cincture of some sort. You attached one end of the hose to the helium tank and taped the other to the interior of the bag. You placed the bag over your head, cinctured it loosely about your neck. You turned on the helium which in the confines of the bag had the effect of rendering you quickly and painlessly unconscious so that you could peaceably suffocate. And since helium dissipated naturally from the bloodstream no cause of death could be discerned, making it a perfect (non)crime for a spouse who needed the life insurance payoff that was denied in cases of suicide. This imagined spouse needed only to remove the bag and other paraphernalia from the restful corpse’s vicinity and report the sudden death via relevant channels then sit back, eat Cheetos, and wait for the clean autopsy report. The problem for Henry (well, not the problem, but another problem) was that Janet would never agree to help him in this way and he could never ask, not even if the only alternative were the locked-in perdition of which he feared the dream of the mutilated corpse was forewarning.
Would you like some coffee?
Would you like to take a walk today?
He had hated the world all his life. Had hated the very idea of the world. Had hated consciousness, that massive deceiver. He had lectured on Spinoza and Descartes for two decades at U Penn but he’d never given a damn about them. Nothing he’d ever done felt as real as lying naked in bed with Janet in those early days of their relationship, when she penetrated his awkwardness to see a Person of Value who was basically already locked-in. Janet’s warm, pale skin. The softness of her lips. Yellow curtains moving in a gentle breeze. Everything else was shit. Yet he wanted it to go on. He loved its shittiness! Jesus Christ have mercy on his soul!
Certain other support groups—not those interested in his disease, but those interested in the humane alternative to his disease, i.e., suicide—led him into certain cyber-labyrinths where certain strangers set up secure channels to engage in highly illegal discussions that brought to mind Hitchcock’s Strangers on a Train. Out of sheer compassion (or something much, much darker) there were people who would do what Janet would not, and Henry arranged a meeting with one of them, who promised via encrypted email to aid and abet Henry’s exit via Exit Bag, if that were his ultimate decision, but also to “perhaps give you a reason to forego the Bag, at least for the moment.” Well, but of course he might forego the Exit Bag! He didn’t want to die! But he couldn’t live much longer. He was now unable to stand at all and even if he could continue eating for a while (he was “fortunate” to belong to the minority of those afflicted by his affliction who maintained this ability beyond the point of major paralysis, and he could still speak clearly, even if he required a mouthful of oxygen every six or seven words so that the longer constructions in which he was accustomed to formulating his thoughts and that he refused to surrender to a simpler diction were now broken up into four or five utterances in whose interregnums existed a desperate-sounding jet of oxygen forced into his lung-sacs through the plastic tube), the calculus he faced was almost laughably simple. On the one hand was death, the unknowable adventure, Jesus Christ have mercy on his soul, Henry Henry puddin’ pie, etc. On the other hand was intense suffering, the intense suffering of those who loved him, and then the selfsame death. So he and the kindhearted (or psychotic) individual agreed on a meeting that they would frame as a legal consultation on Henry’s last will and testament so as to have a plausible explanation for asking Janet to leave the house for a short while, this will and testament being a matter of some sensitivity given the fact that he and Janet were not married and she had no de facto privileges in the doling out of his substantial equities, and she did indeed agree to leave her moribund charge alone with this “lawyer” for sixty minutes during which time she would head over to the Italian market to purchase some of the sausages Henry had been asking for (they were too coarse to swallow, but he wanted to smell them sizzling in the pan). Henry’s intention was to be dead when she arrived back and for the kindhearted or psychotic gentleman to explain his sudden loss of consciousness and death (which were not inconsistent with his disease) in the gentlest of tones while Janet sobbed with relief and then retired to the kitchen to fry pork while his cadaver was removed to the nearest crematorium.
Would you like some coffee?
Would you like to go for a walk today?
Would you like some chocolate?
Would you like me to rub your legs?
They had the girls come by that morning for breakfast. They sat in the sun room, Henry in the wheelchair and the girls around a small table on which plates of eggs steamed in the brilliant white light. Henry tried to say goodbye without saying goodbye, his cryptic sentences slashed by the oxygen-jet’s evil-sounding surrogacy: “There are tigers and there are… princesses… I have had princess… es in my life for… many long and ulti… mately meaningful… years. Would you girls… like to read to me or… maybe you could just sit… and tell me your plans… for this glorious… day?” Janet sat at his side and rubbed the space between his shoulder blades where a few nerves still improbably survived. He would have given up most of the things he’d once had to make love to her one last time. The children endured the breakfast and no one made any mention of death. When they were safely gone he asked Janet for a kiss. She leaned toward him and the light seemed to stick to her and the smell of her skin was like a dagger in his heart and outside in the field a doe led two foals across their property gingerly as if to avoid waking something hungry and a few pink wildflowers seemed to wink in and out of existence as the breeze altered their orientation out at the selvage where their manicured property met the world as it would be. Her lips fell to his and were soft as a cloud and he wished to relive every second of his life with the feeling he had now of pure love and gratitude. To change nothing except his own orientation to the wind. She collected the breakfast plates and he asked her to put on some music. The Queen of the Night’s second aria from The Magic Flute. He tried to sink into it the way he’d sunk into her kiss but it didn’t work that way. The only real pleasures, it turned out, were crass pleasures of the body. Heidegger’s convoluted ramblings on dasein only served to distract from the love not felt, the flesh not touched. But then no amount of love could beat back the desolation of consciousness. The human animal was at war with itself. It was a cosmic joke with no teller.
The bell soon rang and he heard Janet greeting his “lawyer,” who sounded maybe German or Slovakian or Werewolf. There was a short round of polite laughter. The man stepped into the sun room. He had short black hair, short stubble, round wire-rimmed glasses. He was wearing what looked like a very expensive suit. He held a briefcase. “Hello, Henry,” he said. Janet stood at his back wringing a dishtowel as if it were a bird she was slowly killing. “It is a great pleasure to meet with you today. I am a fan of your scholarly publications.”
“You are?” Henry asked. The oxygen hissed into him.
“Yes. Your views on the cruelty of procreation have been a special inspiration to me in my work.”
Janet seemed perplexed. She formulated a sentence that required her to say the man’s strange name aloud and a shot of fear lit up Henry’s insides. Kutya. It was, he realized, the word written in pink neon, above the terrified visage of a tramp, in the dank labyrinths of his guilt-ridden sleep.
Rumpus original art by Dmitry Samarov.