Death Actualization Training

I sit in a gaily lit room, in a circle of like-minded new volunteers, and watch as a stranger takes away my legs. I find it a relief, as I would prefer my legs were the casualty instead of the other choices I carefully penned on scrap pieces of yellow notebook paper: music, Donna and water are still left in my trembling hands. This is death actualization training

Each volunteer was tasked with writing vital elements of our lives on slips of paper, slips which are taken away at random by strangers. This actualization exercise is meant to mirror death in a hospice, a slow journey of destruction to our systems of self.

I turn to the volunteer on my left. He has acne on his neck, but not on his face, as if he has scrubbed it and it all slid downwards. He smiles at me and fans his yellow slips of paper, encouraging one towards me, proffering the least objectionable loss. Now I am death, and I take not the card offered, but one that his thumb struggles to hide.

"Dance," I read to him, and his face falls.

“Death,” the instructor explains, “is sneaky in his selections during our last moments on this planet. When you are sick with some of these insidious diseases, it is not you who chooses what death takes today, tomorrow, the next week. Death may take away the eyes of an artist or the legs of a runner.” I recall an episode of M.A.S.H. where the doctors save a man's legs, proud of their work, but sacrifice one arm. The man wakes from the operation, furious and inconsolable. He was a concert pianist. Legs are of little concern to him.

My mother tells me that I am “playing Russian roulette” with my life. Her view, from 3,000 miles away, is that my apartment is teeming with the AIDS virus, every surface a potential hazard to her sweet baby girl. Three of my roommates, David and Luke and Haruto, are HIV positive, as are most of my friends, but only Luke suffers from full-blown AIDS. We share all our meals and frequently join in “cuddle puddles,” limbs tangled on the couch, heads resting on bellies. My job, as I see it, is debunking all the myths. This is prior to widespread internet use, and rumors and misinformation about how AIDS is spread are exaggerated at my mother’s school, her church, her beauty parlor, her weekly bridge club. I tell her that AIDS can only be spread through vaginal fluid, breast milk, semen. The word semen hangs in the air.

“Mom, you can’t catch AIDS from hugging or saliva.”

“Are you kissing him?”

“No,” I shoot back, “but I could if I wanted to!”

Mom is crying on the other end of the phone. I hang up.

III

Luke’s hands shake as he opens my gift. Like any gift giver, I watch his face while the wrapping is removed. As he slowly skins away the last of the paper, he looks confused. My lover, Thom, groans.

“It’s for grooving out in the shower,” I say. “See, it’s waterproof and you can play the radio or even CDs.” I am excited for him. I listen to my tunes in the shower, and what a beautiful start it is to my day! This gift will bring some joy back into his life. I picture Luke smiling again, listening to the Red Hot Chili Peppers, bopping his head to the music.

“I think Luke is past his ‘grooving out’ days,” says Thom under his breath.

“Thank you, sweetie,” says Luke, “but I can’t stand up in the shower any more. I could listen while seated, I suppose. Really, it’s a nice gift.” He tries to lean over to hug me but can’t seem to rock his frail body forward enough. He lacks the momentum. He just waves at me instead. I can’t shake the image that he looks like a small child and an old man all at once.

"We like to think we can choose.” Here the death actualization instructor pauses, and I turn to the man on my right. He touches a card from my hand, and I wince. We play a game of tug of war. He looks at me with big blue eyes and one raised eyebrow as if to say, You can’t control which card I pick. You can’t control Death. This man is too cute to be Death. If he was just handsome, I could have seen him as Death, but he has dimples. Death shouldn’t have dimples. This boy-disguised-as-Death takes the card I have been grasping tightly. Music. I shudder when he takes it, remembering the baby grand piano in my living room, the music of Miles Davis and Coltrane luring me to sleep every night and the Violent Femmes that I sway to in the shower.

I have two cards left.

The first “card” Luke lost was his sense of balance. Shortly—very shortly— followed his family, then his sense of taste and smell, his physique, his dignity. Luke is the first in my circle of close friends to be dying of AIDS. It was Luke’s turn in a hospice that led me to this volunteer training. The training was my “gift”, what I thought I could offer, and it is much more meaningful than a waterproof cd player.

The instructor tells us that if a patient falls, don’t help him up.

“You could harm the patient,” he says. “Get down on the floor with him until help arrives. Just stay down together.”

He then writes the word DEMENTIA on the white board. He uses a purple marker, so the word has an oddly jovial character.

“Often we receive requests for cigarettes or weed or a martini. The hospice coordinator will follow the manual and tell you not to play along.” The instructor looks around as if expecting the gathering to find fault in his next statement. He leans in toward the volunteers and stage-whispers, “I disagree with the coordinator. Just pretend to pour the patient a drink. In severe dementia, he doesn’t know where he is. He really thinks he is in a nightclub. No harm in make-believe at this stage in the journey.”

Death actualization training is almost over. The stranger with the neck acne takes another of my cards.

“Donna,” it reads—my best friend.

It is my turn to exact revenge. I take a card and think, you don’t have a choice, feeling superior in my status as Death.

“Piano,” I say, and the face of the boy clouds.

The trainer asks us to read our one remaining card aloud. The room purrs with the vibration of precious words. Names of vital family members and friends share the air with musical instruments and favorite meals and hobbies. I repeat my mantra of water water water, and the quivering of it lifts me like a wave.

“What are we willing to live with?” the trainer asks. “Or, perhaps, what are we willing to live without? We all have a threshold.” It is for this reason that living wills are created. It is for this reason that people choose between guarding their dignity or remaining plugged to machines.

“Why did you ask us to put the name of our closest friend on a card?” asks one death actualization participant. “Death won’t take that person away.” I see his is an idealist’s view, a vision of his partner or friends by his bedside, brushing his hair and holding his hand.

“You’d be surprised,” says our trainer, pacing the room. “Parents and friends are unaccustomed to death happening so quickly, especially to daughters, sons— the young. They fear they will catch AIDS from touch or even breath. Don’t be afraid to touch the patients. Remember, if it is oozing or bleeding and not yours, then don’t touch it. Otherwise, your hand on theirs may be the only non-clinical touch they’ve received in weeks.”

Nutrition experts use the word wasting to describe patients who unintentionally lose five percent of their body weight in a period of six months. The idea of wasting a human, of a human as waste, thrown away, is chilling.

At first the term wasting gives me hope. Here is something that is easily fixed. You’re wasting away, my grandma would say, seeing my jeans sag on my ass. She would feed me. Chicken and dumplings would do the trick, as would a trip to Morrison’s Cafeteria. Luke clearly needs food! Just eat, Luke. Eat. Problem solved. Bring him his favorite! A gift of pesto pizza from that little place in upper Haight. Our tradition was to order this on movie nights, before Luke was in the hospital, back when we all snuggled on the couch.

Remember movie nights, Luke? The grease so thick on top of the pizza that I clutched a paper towel and watched the green oil soak into the white.

Luke has ulcers in his mouth.

Wasting is linked to disease progression, says Luke’s doctor.

No pizza.

At death actualization training, I had one thing left to live for. Water.

“Death comes in stages,” the hospice coach said, smiling. “Take another card from your partner.” Water. I always felt I was not meant for land, born myopic and clumsy, lacking vision and grace. In the water I was elegant, clear-eyed, buoyant. Every day I swam for two hours. The brackish Pacific Ocean lifted my awkward body, and I floated with no effort, at peace. But then the stranger took my final card, forever beaching me.

My hospice training was complete.

VII

The AIDS epidemic hits our city with such force that there is a shortage of caregivers. Nurses rely on volunteers for many real duties of patient care. I am given free range of the hospital, and this seems to me a cosmic mistake. Isn’t there anyone more qualified? I fill out meal cards and escort patients to the bathroom. I am free to wander into patients’ rooms at random. In many cases the patients are alone, abandoned by family who fear their illness. I listen as Room 208 recounts his life, his regrets, his loves. It seems made-for-T.V., a mawkish moment where the actor uses the proverbial deathbed to confess his sins— yet it is real. Room 208 recounts events to me as he looks past me, his eyes lit with some unclouded memory. Dementia grants me a first-row seat to watch patients press rewind and then play, but the memories come in no real order. “When the cops pulled us over I thought I would shit” is followed by “and I didn’t mean to hurt him, his wings were too delicate,” then “he always got his way, even after he stole my glove and he admitted it to Mom and I still got in trouble for that one.”

When I take the hand of Room 208, his reverie stops. He seems to float back to reality. “Thank you,” he says, and he begins to cry. “No one has touched me in weeks. Your skin is so soft. The softest skin I’ve ever touched. It feels like a velvet bag, like a favorite… a favorite… Thank you. Thank you.”

VIII

“I need to get to the hospice,” I say, rummaging under the bed for my bra.

“Mmm hmm,” my lover says, kissing my lower back. It is Saturday, and my volunteer shift started one hour ago. I am still naked. I am naked a lot, having rediscovered the delights of sex with a new lover.

“The patients can wait,” my lover says, and she pulls me back down on her bed.

I arrive at the hospice, still warm from the bedsheets. The smell of ammonia hits me, and I shield it by smelling my hands, which have the musky odor of my lover’s bedsheets.

Room 208 wants a martini but not the crappy gin kind—bring him good vodka, three olives. An imaginary martini. This is my gift to him. I cup my hands around the invisible shaker and pump them up and down, making sounds with my mouth of ice against glass, more difficult to produce than you would imagine. Once the patient is in a familiar interior space, cigarette lit, old self restored to some point in time, his confessional begins. "Shit, that cop was fast…"

I continue to pour imaginary martinis for an entire ward of thirsty patients. My sham bartender skills are impressive.

On another floor, in his own hospice bed, Luke is recalling his time in Japan. He says he is choking, choking on gyoza, a pork dumpling. Luke's lover, Haruto, reaches inside Luke’s mouth and removes the imaginary dumpling, placing it on the nightstand next to Dixie cups full of brightly colored pills. Faux-dumpling removed, Luke's narrative, having rewound to the phrase you remember, can continue. He speaks in a hybrid of Japanese and English. He looks past us.

“You remember that day watashitachi ga sore o mitsuketa toki stray cat in Kyoto…” Luke’s breath is horrid, a mélange of acetone and decaying fruit.

I still smell like my lover; she has a sweet odor, like brown earth.

Room 208 is pulling at his bedsheets. Terminal restlessness is often caused by metabolic disturbances, the body shutting down—or uncontrolled pain. Room 208 has sepsis, which increases his terminal restlessness. The nurses have added siderails to his bed, for his safety. The nurse tells me his visitors are limited, though she makes a face that betrays the shared secret between us. He has no visitors. It seems that his best friend card was already taken away by Death. I wonder what cards he still holds in his hand. Music? His sense of smell? What has he been allowed to take with him on this slow hospice journey? He tries to get up.

“Just stay put. You don’t have a choice,” I tell him, my death actualization training colliding with his very real death. The dance of the care-receiver and the caregiver. If he does fall, I have no plan. “Get down on the floor with him until help arrives,” the trainer had said. “Just stay down together.”

I take a cigarette break in the courtyard. Dozens of floating red embers are shuffling around, held by dozens of nurses. One nurse told me that every caregiver she knows smokes. “We know better,” she said. “We’ve all seen the effects of smoking, the patients with grotesque mouth sores, those with COPD, cancer.” She told me she knew her air sacs were being tortured by smoke. “We all know,” she said, between sips of smoky air. “We just don’t give a shit.”

I finish my second Marlboro, and on my way into the first-floor corridor, the night nurse catches my elbow. She tells me that Room 208 will not be here in the morning.

“I can tell when it’s their time,” she says.

Luke’s grooving-out days never return. The doctor says, “any time now,” and we wait for the loss. I am in his room, and he is panicked again. I begin to take another imaginary dumpling from his mouth. He is choking, choking— on imaginary food. It is very real to him, and he is in agony. “Take the dumpling out of my mouth,” he repeats. Then he falls still.

When he takes another sip of air, I am a bit disappointed, then immediately pained with guilt. I anticipate his last breath with relief–for his suffering and my caregiving to be at an end–but I dare not give voice to this.

At Luke’s funeral, we gather on Stinson Beach. His parents come to claim his empty shell and bring it back to the east coast, but I never bumped into them when he was dying—not once. They never haunted the halls of the hospice, were not witness to their son’s last inhalations. Now, we gather at Luke’s favorite spot. We toast him, and Haruto gifts us little packets of coins from Luke’s travels all over the globe to remember him by. It is a typical San Francisco day, horizontal rain, overcast, and yet I cannot fight the urge to walk towards the ocean. I stand on the edge of the surf, my dress hem clinging to my legs, then I dive into the waves.

The brackish water lifts my awkward body, and I float with no effort, but also no peace.

Lockie Hunter serves as curator of the long-running Queer Girls Reading Series and co-producer of the poetry and prose radio program Wordplay on 103.3 FM in Asheville. Her words have appeared in Brevity, The Baltimore Review, The North Carolina Literary Review, Quarter After Eight, Hiram Poetry Review, McSweeney’s Internet Tendency, Slipstream, Gulf Stream Literary Magazine, Arts & Opinion, New Plains Review and others. She holds an MFA in creative writing from Emerson College. Lockie’s essays have been nominated for Best of the Net Awards and the John Burroughs Nature Essay Award.