Burning Loss
By: Malcom Gregory Scott
Tags: Death, Queer, Survival, AIDS, HIV

All things change to fire

And fire exhausted

Falls back into things

Heraclitus, as translated by Brooks Haxton

The winter of my dissolution was the coldest of my life.

I refer not to the mere red-faced cold of this cloudy day these sixteen Decembers later here on Irene Farm in Lake County, California, this literal cold that nips my typing fingers so far from the blazing Fisher stove; I refer to the impossibly deep cold of the grave itself. After years of diminishing immunity since my HIV diagnosis eight years earlier, the terminal stage of the disease held me in its icy grip as 1995 neared its end. Outside the horror of a surging spike of fever, I could no longer understand even the idea of “warm.” Long housebound and ever more bedridden, I suffered a near-fatal handful of opportunistic infections while a host of others threatened. And most frightening of all, the grief, disease, and morphine had begun to paw into my very mind, undermining my fading resolve to survive.

Already I had far surpassed my own expectations of what I might endure, how far I would go to fight back, to fight AIDS. Had I not already undergone sickening therapies and horrific procedures — holding out longer than any of my t-cells, every one now long gone? Had I not kept the day-gagging schedule of pills and injections and aerosolized hope? Had I not satisfactorily demonstrated my faith in the singular creed of our biology and culture: “Life above all else”? I was so cold. Could I please quit? Could I just die now?

I seemed to be playing my life’s last act, huddled in a tiny basement apartment situated on Riggs Place in northwest Washington, D.C. the city where I had enjoyed modest, unlikely success as both television writer and political activist. A tidy brick alley afforded me entrance to my digs and communicated with the S Street apartment of my most faithful friend, J.B. One long night late in the year, when sleet, freezing rain, and snow had so glazed the alley with treachery I could not negotiate it unassisted, J.B. had laid a fire of Virginia oak in his fireplace. Already around its hearth he had lovingly arranged numerous boxes bulging with my personal papers. Having ignited the tinder and nurtured the flames to a roar, J.B. arrived at my door to convey me, hobbling in his arms like a man thrice my age, across the alley and into his overheated rooms — fever-pitch comfort to a dying man.

“Just do as much of this tonight as you feel like doing,” he instructed as he eased me onto the floor cushions before the fire and deftly replaced my overcoat with a blanket. “We can build as many fires as it takes.” Drawing open the fire screen, he reassured, “You can always trust me to finish up.”

The fire cracked, logs hissing as if in defiance of their mundane fate; in an age of pyres, alas, to be but a trash incinerator. And thereon I tossed the paper detritus of an abbreviated lifetime. From tax records and receipts to business contracts and medical bills, I burned it all. With what slight pyromaniac glee my cough-racked soul could muster, I burned every scrap documenting every detail of my nearly thirty-three years, surrendering it all to the colors of flames. There in gaseous blue were my pay slips from a brief stint writing a television program called “Trialwatch.” There in glowing yellow were my phone bills from an apartment on N Street, NW, when my number was still 234.0666. There in bright orange were the patient letters from my forgiving agent reminding me of the balance I yet owed him; he too, unbeknownst to me, was succumbing to the plague.

J.B. pushed yet-full boxes to within my reach, and chatted about ordinary things. J.B. had a gift for such chatter and understood its importance in the process of grief and loss. At times such as this and others, like when our friend Dennis was dying in my arms, he artfully narrated the unthinkable in the language of the inevitable. “Oh! I never showed you the bowling ball china! Well, it’s really just a set of plates. But when I was twelve my Aunt Fanny and Uncle Joe were moving to a retirement community, so they were setting things aside for the kids…” J.B. continued as he slipped out of the room to return with a pink vinyl case shaped like a hatbox, opened its zippered lid, and produced one of the gold-banded white porcelain plates from within to place in my shaky hands. An understated garland of laurel barely accentuated with pink blossoms swagged the rim. “Aunt Fanny said I could have Uncle Joe’s bowling ball or these exquisite plates, and I guess even at that age it was a pretty obvious choice for me. They’ve been packed in the bottom drawer of the tansu since I brought them home last Christmas. I forgot they were there. I think Dennis would have admired them — ”

“Coveted them, you mean?” I interrupted with a smile, although participating in a conversation exhausted me.

“Do you think?” The thought made J.B. smile, too. “I wish I had gotten to show them to him.”

I handled the plate nervously as the incinerator yawned for more, a landscape of paper embers already glowing then fading beneath the cracking logs, tiny tornadoes of paper ash swirling around the andirons with every settling of the oak. Returning the plate to J.B.’s much steadier hands, I reached for the stack of folders from Dennis’ files. I had long ago pulled what minimal legal documents must be kept and filed them separately in a folder that I now set aside in the otherwise empty box of materials to be spared the flames. The rest of it, so long avoided, I now fed bit by bit through the fire screen and into the burn.

Why was this happening? Was there reason to the madness of the last decade? Within but a part of a lifetime I had come of age, grown old with sickness, and seen buried a legion of comrades. The culture of personal responsibility in which I had been raised taught me to look to myself, of course. Had I not willfully pursued sexual pleasure for sport? Had I not overcome all inhibitions in that pursuit, convinced that my generation was waging a campaign of sexual disobedience meant to liberate all? Had I not believed myself willing to die for that cause?

Years later one of my mother’s friends would ask casually and ignorantly, “What did you expect? Anal sex is filthy. AIDS should come as no surprise to you.”

Had my entire life been a filthy mistake? Was this horrific death replete with open sores and swollen knots and burning lungs the punishment for my trespasses? Aside from credit for courage, or gracefully accepting my fate, or dying with dignity, what achievement might yet be wrested from my tragic end? And beyond any eleventh-hour awakenings I might personally experience on the brink of my own youthful demise, what success could be stolen from the larger tragedy of the AIDS epidemic overall?

Reams of work orders, invoices and receipts from Dennis’ restoration business sent a flash of white flames licking noisily beyond the flue before subsiding no less suddenly.

Grieving his death these last ten months, I couldn’t yet think clearly about Dennis, my guardian, mentor and friend of the previous eight years, but I believed he would have approved my efforts to leave behind only the smallest and tidiest piles. Foreseeing his own death plainly, he had worked furiously to simplify his own estate and ease my way as his heir. Now could I easily see his small, tidy piles imbedded within my own sprawling ones. What legacy he left to me ends here, I feared. I would not live to be old like my grandfathers. I would predecease my own parents, never to share what Dennis had taught me of food and art and opera, nor to speak of his exploits to future bedmates. Perhaps sitting there that cold night with that superficial papered-over version of myself afire before me, I realized fully for the first time: my life was at its end. Desiring death’s speedy arrival in painful moments of dark preceding months, I had not considered this aspect of my fate so unwaveringly. Thinking only of respite from the misery of recent memory, I had somehow failed to internalize the finality I truly faced. Like the postponed disposition of Dennis’s files now burning so robustly, my death could be forestalled no longer. My oft-whispered wish of the past year would be fulfilled. I would die and soon, perhaps before my approaching birthday, and even so, outlive many friends and lovers who did not survive their twenties, some of whom I may have infected with the fatal virus myself, magnifying my sense that my death was well-deserved.

“Why is this happening to us?” I asked, hiding my words under my breath.

“You don’t need me to tell you about that,” JB answered with the less-subtle drawl he reserved for sarcasm. “You know perfectly well that God hates fags and we have to die. Now finish emptying that one box while I fix us some supper. He didn’t say you had to die hungry.”

Truthfully, though I had no appetite, I was dying hungry, and not only in the figurative sense that I was hungry to invest the plague with meaning or to imbue my own death with purpose. I was literally hungry in the sense that my body was wasting away from malnutrition. A ubiquitous unicellular parasite, harmless to humans with working immune systems, Microsporidia (not to be confused with its equally threatening cousins Cryptosporidia or Toxoplasma) had infected my gastro-intestinal system and so interfered with my digestion that I was starving, not for want of food itself but merely for the ability to utilize it, the hunger of the prosperous. For having pursued my appetites so freely poetic justice or ironic fate or the God of Abraham, Himself, by some accounts, had sentenced me to die of hunger. In turn, my peers and I had endowed the proximate agents of execution with almost endearing nicknames, our lame answers to gods or fates; “micro,” “crypto,” and “toxo” were only the most recent ax-men.

The medical story of my survival through the worst of the AIDS epidemic thus far had been the story of the rare surfer who by sheer luck of timing and a gift of determination somehow rides the tsunami rather than be drowned beneath it. I watched as so many were swept beneath the very wave that held me aloft; they died of opportunistic infections that first took medicine by surprise only then to be mastered by prophylaxes administered according to ever more complicated standards of care organized by declining t-cell levels. I owe my life to those people. Their deaths taught doctors and pharmacologists how to protect those who followed, like me, from the same infections.

As management protocols and prophylactic therapies improved, people with AIDS began to live longer, allowing the disease to advance further, and the opportunistic infections to grow ever more gruesome and bizarre. Less than a decade earlier, patients had routinely died of Pneumocystis carnii pneumonia (PCP), but by the end of 1995, most people under treatment could rely on preventive drugs to keep PCP at bay. By the mid 1980’s, the purple-lesion-causing “cancer,” Kaposi’s sarcoma (KS), previously diagnosed almost exclusively in middle-aged males of Mediterranean or Eastern European descent, had become the universally recognizable signature of AIDS, an AIDS-defining illness once commonly dubbed the “AIDS rash”; but already by the end of the decade, doctors had refined their responses to KS such that fatalities were growing rare. I suffered both PCP and KS on the heels of their deadly tenures as the most likely opportunistic infections to cause death in a person with AIDS, but survived both because my physician, Dr. Douglas Ward, was well-informed, risk-savvy and survigrous in his defense of my well-being, and because the timing of my diagnoses so auspiciously corresponded with burgeoning clinical understanding of how to treat those conditions — not to cure them necessarily, but perhaps suppress them, and possibly survive them.

Now, apparently, my rare surfer’s luck was nearly exhausted. I felt my balance waver. I knew my board was slipping from the crest. Just as I had once taken extreme but freshly-proven measures to fight PCP and KS, I would now have to take extreme and unproven measures to combat “micro,” and if those measures failed, or did not succeed quickly enough, I would have to submit to a yet more aggressive intervention, the insertion of a feeding tube through my chest, or die of wasting syndrome.

That very afternoon, hours before J.B. had escorted me to his hearth, my bathroom scale reported my weight at one hundred and eighteen pounds, a few lighter than the threshold weight at which Dr. Ward had insisted we revisit the need for the feeding tube, but I didn’t hurry to bring this fact to Dr. Ward’s attention. Within days of the doctor’s injunction, sickroom visitors had reported to me how two acquaintances had recently both died of toxo, one following a long battle with crypto, and the other, like me, after a long battle with micro, but the suspected common culprit was the feeding tube inserted to arrest wasting. Positively everyone who got that feeding tube ended up with toxo, they told me, and toxo as everyone (who knew anything) knew was the ax-man au courant. “Greg Scott you listen to us. You have to eat. You have to keep your weight up so you don’t have to get that awful tube.” So, rightly or not, had I come to conflate the insertion of that feeding tube with final surrender, total bare-necked submission to the ax-man “toxo,” reducing the fight for my life to a fight against starvation.

Wasting syndrome had long threatened, of course, and combating it thus far had seemed a challenge for which my life had prepared me well. I had been gardening and cooking since childhood, and as an adult had taught myself to cook quite well. Once unfit to cook for myself, I persuaded others to cook for me in exchange for instruction. I had been open to the appetite–enhancing and nausea-suppressing benefits of marijuana since watching a friend waste away years before, and was now happy to use it every day if a supply was at hand. My excellent doctor guided me to the appropriate anabolic therapies as well, long before they appeared on the standards of care, and thus I commanded an impressive anti-wasting arsenal including human growth hormone (HGH), testosterone, nandrolone, and human chorionic gonadotropin (hCG). Over time had emerged the maxim that lean muscle mass corresponded to time, time remaining before I died. And if my protruding ribs were any measure, time was precious indeed.

J.B. reappeared from the kitchen with two of the bowling ball plates, now filled with favorites: sliced tenderloin of beef, green peppercorn sauce, roasted Brussels sprouts glazed with balsamic. “Come try to eat some of this. I’ll feed the fire.” After helping me to the table, J.B. bent over the banker’s box at the hearth. “Everything in here goes?” I nodded as he withdrew stacks of travel vouchers and receipts from my days at Fox Television and slipped it all through the screen.

Looking down at the plate before me, my heart sank. Among the mounting losses I attributed to AIDS, I could now count the enjoyment of food. On the question of when to submit a dog to euthanasia, I had heard that one could always tell when the dog was finished with life, and one of the supposedly indubitable signs invariably cited was that the dog would no longer enjoy its food. Were I a dog, I suspected, I would have already been “put down.” I could sense the food was warm and nutritious, but beyond those qualities I registered only the intellectual awareness of beef, pepper, brassica, balsamic, and J.B.’s culinary skill; only the ideas of those things penetrated my discomfort. Leaning over the plate and inhaling deeply, the muted aromas were distorted. Coating the tines of the fork with sauce au poivre vert to taste it, the flavors met none of my expectations — luxuriously delicious food tainted by sickness and an utter lack of desire to eat.

Although I sometimes admitted to the persistent metallic taste left in my mouth by the medications, and although everyone witnessing my decline knew I was frequently nauseous and rarely hungry, I had told not one person, not J.B., not even my mother, that I had taken no pleasure in food for months. In November, I had even attempted the charade of preparing a turkey dinner with all the trimmings, and was somehow well enough to do it, but afterwards wondered if everything was revealingly over-seasoned. Still believing everyone might wrongly attribute such a sudden and comprehensive failure of my palate to that metallic taste, I took a bite of the thankfully tender meat, and through chewing teeth and closed lips murmured, “Mmmmhhh.” J.B. cut his eyes to me as if to say I fooled no one. In that moment, without a word, J.B. had guided me to a second crucial awareness that night. If the first was the finality I faced, the second was that I did not face it alone. This finality that I must now embrace was not solitary, but shared. J.B. was there with me, the strength of his presence my bulwark against despair at a cost to him I dared not, could not calculate; I trusted he would be with me to the end, and when I died, I would number among the mounting losses he would attribute to AIDS. In at least that narrow sense, my death would embody finality for those I left behind as much as for myself, even as Dennis’s death had been final for all of us.

Prior to these, my presumably last months among the living, my own accumulated losses had isolated me, rendering my fate to the solitary, but not because I was unloved or lacking support. I enjoyed both love and support in abundance and would probably not have survived without them. Rather, I experienced the loss itself as contrast to the world of the living, opposition to everyone else’s normalcy, antithesis to life without AIDS. An endless succession of funerals and memorial services commemorated the losses of friends and lovers even then as if behind a shroud, the world roiling along as if not to care, isolating entire communities of the AIDS-affected. Likewise the loss of the ability to earn a living, have sex, drive a car, or leave the apartment separated me in a material way from the world of the yet truly quick, while the base physical reality of dying with AIDS simultaneously eliminated all the barriers that culture constructed between human and nature. Nothing illuminates desire like the loss of desire, and nothing illuminates our earthliness like the loss of bowel control.

Paradoxically, while the losses that gathered isolated me, creating new separations between self and others, the approach of death itself seemed to dissolve all such boundaries, so that even death seemed to live. Concepts I’d previously only perceived as dualities, such as life and death, had begun to merge into singular fluid spectra, endless continua rather than finite sets of binary opposites. Solid walls were dissembling into murky portals. Static categories were crumbling into chaotic flow. Straight lines were being tortured into meanders, and the edges of everything were in motion, including the edges of my very self. Death was dissolving everything within and without into a foamy surf. I believed I was experiencing the lifting of the veil between the worlds, with a boot in both, surrounding ghosts urging me through, to cross the threshold that already altogether isolated me from the living, in spite of my yet-beating heart.

If this all-encompassing sense of dissolution were instead only an affect of the morphine, prescribed to slow my overwhelmed digestive system and afford it a better chance to perform its function, then I’m doubly grateful to morphine; triply so when I consider the bonus palliative benefit. Surely I was more comfortable because I happened to be on morphine to slow the wasting; many people with AIDS took morphine for comfort during these terminal stages of the disease. Possibly it had also given me a new perspective on everything knowable.

With all boundaries dissolved I was free to discover my expanded self, no longer confined by narrow ego but extended, first to those who sacrificed to care for me, for without them I would have already ceased to be, then further to the food I ate and the water I drank until entire food-sheds and hydrological systems seemed to move through my veins, then to the whole of the biosphere as if the earth itself were conspiring to sustain, and finally to HIV itself, my teacher, my destroyer, my end. Years later, the deep ecological thinking of Arne Naess would supply the philosophical prose to articulate this emergence of my ecological self, but then I could cite only Whitman. “I am large. I contain multitudes.” And then: I am shrinking. I contain multitudes of retroviruses, parasites, bacteria, and fungi.

The boxes were almost empty when J.B. decided I could do no more. He left me by the fire while he crossed the frozen alley alone to ensure my own rooms were sufficiently warm before escorting me home to bed, mirroring his path of earlier that night like the yogic reversal of some love-releasing asana: the friend.

Such warm thoughts notwithstanding, recalling that bitter winter of my dissolution remains difficult even as I write these many years later. I hail from a generation of queers who walk the earth yet dazed from the trauma of the plague at its worst. The clinical cases of Post Traumatic Stress Disorder (PTSD) no doubt abound among us. Home for the holidays with family a few weeks later in Northern Virginia, someone took my photograph, in contradiction of my long-standing request. To my knowledge, it’s the only existing picture of me with the reaper on my back, and it horrifies me still. The lingering horror that is the shared aftermath of AIDS survivors everywhere might seem another AIDS-related loss to pile upon the heaping heap of losses, except for one potentially redeeming truth: we survived. We survived to change our lives to better reflect our best selves. We survived as living subtext to a grim but important history. We survived to share what we learned. Wisdom redeems all experience, if we permit it to do.

The howl of a lone male coyote wandering the woodlots bounding Irene Farm punctuates the hiss and crackle of tonight’s fire, but cannot disrupt the powerful memories of the fire J.B. laid for me sixteen winters ago, or the burning loss it will always represent to me. I would continue to ponder the earnest questions that had been illuminated for me as never before by that firelight. I would hold them close like clinging friends more welcome than any answers they might evoke: questions about desire and its departure, questions about means and meaning, questions about being and not being, in short, the questions of a lifetime clarified only by a deadly chill. To prepare for the ultimate loss, I gave up everything else — threw it all to the fire — and perhaps thereby gave myself whatever slim chance allowed an interloping fate to intervene. From atop the tsunami, gratefully, I still enjoyed a view of the beach and all that spread beyond, and out there I could spy the barest glimmer of hope.

Irene Farm

Lower Lake, California

December 2011