Surcease of Sorrow

I’m typing case notes in the hospice office when one of the home care nurses walks up and sings, “The son’s gonna come in to-mor-row.”

I chuckle-groan. Sons from out of town haven’t been around to experience the patient’s decline, so they can’t understand the decisions made by caregivers who have been. Sons from out of town, whether they are conscious of it or not, believe they can swoop in for a few days and fix whatever’s wrong. Sons from out of town, poor guys, are a pain to educate.

***

The next day, I ring the doorbell at the patient’s house. The son opens the door, walks out and closes it behind him. He crosses his arms over his chest and frowns down at me. “I’m taking Mom off hospice.”

Here we go. I keep my face and tone of voice neutral. “What does your mother say about that?”

He scoffs. “You’ve got her so doped up she doesn’t know what she’s saying. I’m doing what’s best for her.”

I try a sympathetic smile. “I know it’s hard to see your mom like this, but as long as she’s mentally competent, she has the legal right to make her own decisions.”

“It’s for her own good.”

The temperature is in the triple digits. I wish we could do this inside. “I understand you have her best interests at heart, but the law says two doctors have to agree she’s not competent before her health care power of attorney can take over her decision-making. And that’s your sister. Besides, would you want to put your mom through all that?”

He takes a step forward. I get ready to dodge. I probably won’t need to, but it’s best to prepare for the worst. He says, “You don’t know what you’re talking about.”

Why is it that ignorance and arrogance so often occur together?

Facts aren’t working, so I default to empathy. “If I’m hearing you right, you’re worried about the drugs we’re giving her.”

He spreads his arms wide and thrusts his face toward me. “Yes! She’s getting addicted!”

And there it is.

***

In my years of hospice work, dozens of patients have told me, “I’m not afraid of dying. I’m afraid of suffering.”

Death can be beautiful, but it is never pretty. And it’s always painful. As the natural dying process goes on, there’s more and more pain, and patients need higher and higher doses of morphine to ease it. But hospice patients don’t get addicted. Even if they did (which I repeat, they don’t), what would it matter? The dead don’t need drugs to be at peace.

But we as a society are so afraid of addiction that families cannot understand it isn’t an issue for the dying. That stems from an inability to accept the coming death. Humans can only take reality in small doses, especially when we are about to lose someone we can’t bear to be without. Even people who believe in an afterlife sometimes doubt when they’re face-to-face with the possibility of final separation.

Because morphine and the end of people’s lives coincide, families often ask to have the patient taken off it during the final days of active dying. They say, “The morphine is killing him.”

When that happens, it’s the hospice staff’s unpleasant task to confront them with hard truths. “The (cancer, congestive heart failure, stroke, etc.) is killing him,” we say. “The choice you have to make is whether he dies in comfort or in pain. We can take him off the morphine, but do you really want to increase his suffering during his last days?” Families most often continue the morphine, but some have to see the consequences of removing it before they understand how necessary it is.

***

As a former substance abuse counselor and recovering alcoholic with almost fourteen years of sobriety—which could vanish in an instant, in any instant—I can say with authority that I understand addiction. In my opinion, addiction happens more because of emotional pain than because someone develops a physical tolerance for a medication. Until the past few years, the medical establishment has done a good job of ensuring that treatment of bodily pain doesn’t result in addiction. But emotional pain is often ignored because its disabling power is not well-understood.

If you scratch the surface of any person you pass on the street, you will find sorrow, regret, guilt, shame, self-doubt, loneliness, and a pantheon of other woundedness. Not to mention scars from traumatic experiences. To be human is to carry tragedy in our hearts.

While effective treatments exist to deal with emotional pain—talk therapy, support groups, and psychiatric medications, among others—there is a stigma attached to people who admit they need that kind of help. Having emotional problems or an imbalance of brain chemicals is still often seen as a defect of character, a moral failing, weakness. And no one wants to be called crazy.

Drugs and alcohol can distract us from our emotional pain, for a moment. So can food, sex, and work. But that distraction, that “high,” is hard to maintain. The more people use their drug or activity of choice, the more they need to use it to get the same effect, until they have to use very large amounts just to be as miserable as they started out. And their emotional pain is right there waiting for them. This is why so many people become addicted to multiple substances or activities. For example, my parents had to drink two pots of coffee and smoke a pack of cigarettes just to make it out the door in the morning.

According to the Centers for Disease Control and Prevention (CDC), addiction to nicotine kills 480,000 people a year in this country.1 The CDC also reports that pregnant women who smoke give birth to more premature babies, more infants with low birth weight, more with weak lungs, and their babies are more prone than others to sudden infant death syndrome (SIDS).2 But, in my opinion, society doesn’t regard smokers as addicts because tobacco products are legal.

What would we learn if someone compared the number of deaths in this country caused by legal substances to the number of deaths caused by illegal substances?

Caffeine keeps the economy running. It makes it possible for us to put one foot in front of the other as we do things we don’t enjoy, in places we don’t want to be, with companions we had no say in choosing, five days a week.

According to a study by the Kuakini Medical Center research center in Honolulu, 90% of Americans consume caffeine regularly.3 Their study calls caffeine this country’s most popular drug. Even though people build up a tolerance for caffeine and experience withdrawal from it, experts differ on whether it can be classified as addictive. Evidence supporting that it is: the combination of caffeine and sugar has built a Starbucks on almost every street corner in the United States.

Because part of my stomach is paralyzed, I had to give up both caffeine and sugar. For me, it was harder to stop using caffeine than alcohol. Sugar was harder than both of those. Most of us know that sugar isn’t good for us, but we don’t think of ourselves as addicted.

Everyone’s addicted to something.

So it’s no wonder that when opioids became easy to get, people lined up for them. Without effective oversight, widespread addiction was inevitable. As I write this in early 2019, the United States is suffering an epidemic of deaths from opioid overdose.

What is it about the human race that compels us to monetize, and/or weaponize, every good thing?

***

As a species, humans are addicted to black-and-white thinking. We want things to be simple. We want things to stay the same. Good/evil, male/female, strength/weakness, patriotism/treason. We don’t, don’t, don’t want to consider multiple possibilities for these or anything else.

To experience this, just try to get people to vary the way they do their jobs. I’m willing to bet money that most of them won’t be able to see over the sides of the rut they’ve dug for themselves.

Ruts are comfortable. Ruts don’t require thinking. Ruts give us the illusion that the world is under control. Ruts make us feel safe.

Thinking about things in depth leads to uncertainty, which is the opposite of feeling safe.

***

Modern hospice care traces its roots to Dr. Cicely Saunders, who opened the first hospice in England in 1967.4 Her strategy—using multiple disciplines to treat the physical, psychological, and spiritual problems dying people encounter—proved so successful that other medical specialties adopted it. As better treatments for incurable diseases reduced the number of deaths and increased the number of patients living with chronic pain, acceptance of “palliative care” grew. Medical professionals began to focus on the dignity, integrity, and quality of life of people with ongoing, long-term pain. The modern Palliative Care Movement was born.

The World Health Organization (WHO) began researching palliative care in the 1980s. In 1990, it published a paper recognizing it as a necessary part of patient treatment, and it became more possible for people worldwide to get adequate pain control without having to prove they were going to die soon.5

Which brings me to the final addiction I want to talk about: the addiction to the idea of cure. Cure is often only a fantasy. The more wedded people are to this fantasy, the more the patients involved suffer.

According to the National Hospice Organization, in 2017, 27.8% of Medicare-funded hospice patients were on service for seven days or less.6 That includes the people who had the misfortune to die in the ambulance on the way from the hospital to the inpatient unit. The reason that percentage is so large is that so many patients and family members are addicted to the hope for a cure. They can’t let go of it. And they fear “giving up,” as though their mental attitude can control survival.

Not that mental attitude means nothing. I have often seen patients hang on until that last person comes and says goodbye, then draw their final breath as soon as that goodbye is over. In our hospice about half the people who died on our inpatient unit waited until they were alone to die.

***

The out-of-town son, Jackson, extends his stay as long as he can. He stays awake to watch over his mother at night, so his sister can get some sleep. I give him resources on overnight caregivers for after he leaves.

I ring the doorbell. Jackson answers and steps back to let me in. His head hangs heavy into his slumped shoulders. His skin is pale except for the purplish darkness around his eyes.

“You look exhausted.”

“Ya think? I’m making coffee. Want some?”

I shake my head. “I’ll look in on your mom.”

“We’ll be in the kitchen.”

The smell of active dying—a combination of concentrated urine and the acetone-like odor of dying cells—is an invisible fog in the unlit room. The odor and I are not friends, but we are longtime companions.

The patient’s hospital bed is set up in the living room so she can still feel like a part of the family’s life, and so she can see the Catalina Mountains out the picture window. Today, the curtains on the windows are closed.

I bend over the bed and touch her hand. “Hello, Cathy, it’s Peggy. Do you feel like talking?” Without opening her eyes, she moves her head one slow trip left, right, center. I squeeze and release her emaciated hand. “I’ll go talk to your kids, see if I can help them out in any way.” The corners of Cathy’s mouth turn up a little, and drop again.

The kitchen has a fog, as well—cigarette smoke. I sit at the table with Jackson and his sister, Treacy. No one speaks for a minute.

“Your mom’s very weak now,” I say.

They look at me with eyes that don’t want to know.

“It might not be long,” I add.

Treacy goes to the counter and pours more coffee. She stays there with her back turned.

Jackson clears his throat. “Will dying hurt?”

I know he has already asked the nurse the same question. And the nurse’s aide. And the chaplain. I give the same answer we always do. “Helping people be comfortable all the way to the end is the thing hospice does best.”
He rubs his hands across his face. “Yeah. Thank God.”

Treacy’s sob is so quiet it couldn’t be heard anywhere that was not a place of vigil.

After a respectful pause, I say, “What’s happening with hiring caregivers?”

***

Three days later, Cathy dies a pain-free death with her children by her side.

After the nurse pronounces the death, she and I clean Cathy’s body and re-dress her, so the children can say a last goodbye before the funeral home van comes. After that, the R.N. collects the several forms of opiate Cathy took during her time in hospice and takes them to the hospital for disposal. On her way out the door, Jackson gives her an awkward one-armed hug. He says, “Thanks for not letting her suffer.”

***

The overdose epidemic is not okay. We need to do something about it. But. I’m afraid humanity’s desire for simple solutions to complex problems will rocket us back to the days when non-hospice patients were denied pain control. I worry that our fears will overwhelm our capacity for empathy. I fear the return of preventable physical suffering, and I weep for the helpless patients who will be forced to endure it.

 

Reference List:

  1. Fast facts and fact sheets: smoking and tobacco use. Centers for Disease Control and Prevention.  https://www.cdc.gov/tobacco/data_statistics/fact_sheets/fast_facts/index.htm. Updated February 6, 2019. Accessed September 11, 2019.
  2. Substance use during pregnancy. Centers for Disease Control and Prevention.  https://www.cdc.gov/reproductivehealth/maternalinfanthealth/substance-abuse/substance-abuse-during-pregnancy.htm. Updated July 24, 2019.  Accessed September 11, 2019.
  3. Caffeine: America’s most popular drug. Kuakini Health System. https://www.kuakini.org/wps/portal/public/Health-Wellness/Health-Info-Tips/Miscellaneous/Caffeine–America-s-Most-Popular-Drug. Updated 2019. Accessed September 11, 2019.
  4. Clark, D. Cicely Saunders and her early associates: a kaleidoscope of effects. In: To Comfort Always: A History of Palliative Medicine since the Nineteenth Century. Oxford, England: Oxford University Press; 2016:1-33. doi:10.1093/med/9780199674282.001.0001. Accessed September 12, 2019.
  5. Cancer pain relief and palliative care: report of a WHO expert committee (meeting held in Geneva from 3 to 10 July 1989). World Health Organization. http://apps.who.int/iris/handle/10665/39524. Published January 1, 1990. Accessed September 14, 2019.
  6. National Hospice and Palliative Care Organization (NHPCO) facts and figures: 2018 edition. NHPCO. https://www.nhpco.org/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf. Updated July 2, 2019. Accessed September 21, 2019.

The Weight of Lilies

2007

#racism #nofaithinhumanity

It was an old image. Two black men—you could tell they were black because they were in the light, clothes torn. They hung from a large pendula dogwood tree. Below them a crowd of whites stood, shaded. In the foreground, a man looked, eyes wide, into the camera. One arm reached out, bent up, palm open, like a tree branch reaching for the sun, without the weight of two black men. The man drew wide, radiant, riveting. 

Li imagined himself hanged, swinging naked from the young oak in his backyard, struggling for breath against the weight of his body. He scrolled down, observing  the lynched men while holding firm his penis, the pinkness of its soft head, was somehow wrong. He’d been browsing the profile of Amanda on Tumblr who must be an activist. He chose her for her name. It wasn’t really cheating if she had the same name as his girlfriend. Interspersed between her nude modeling pictures were political statements and motivational quotes. At just thirteen, Li wasn’t much practiced in masturbation. If he were, he may have avoided disaster. He’d gotten the tissue, the lotion, waited until his mom had gone to sleep, just like Saul, the older boy from down the street, had said. Li’s only foible was wanting to find the perfect picture. He held himself, browsed, waiting for the right one, and ended up staring at two dead black men.

He used the next picture: Amanda bathing, her nipples covered with soap suds.

The sound of the toilet flushing signaled the post-masturbation-guilt-flood. He was crying when he turned and found his mother leaning against the bathroom doorway, the rigid lines of her face illumined by the blue light from the next room over. 

“You’re up late,” she said. She pulled a bottle of lotion from behind her, set it in its place on the counter. 

Li looked into the mirror, lost himself there, obscured in near darkness save for the shadow of a nose more round than his mother’s. “Sorry,” he said.

“Go to bed.” 

2012

Three Hispanic men suspected of raping Arizona girl, 10, while mom shot up in bathroom.

“I’d kill every last one of these bitches. Slowly. Fucken pieces of shit” –Saul 

The image was of three men who might have been boys, mugshots. Black lines measuring height made up the background. One of the men had a mole on his right cheek. Another had crooked teeth and two lines shaved into his eyebrows. The last one had a tear tattooed beneath his left eye in black ink, the same black ink of the title in which Li found more images. There, the ten-year-old girl in her own home, mouth wide and screaming for her life, these same three faces around her, in her. There was a mother in the bathroom, on the toilet seat, needle still stuck and resting sideways on the inside of her arm. 

Fuckers.

Li saw himself killing the men. He was not slow about it. He used a gun. Execution style. In his head, there was no blood, no stench, no sound, no cries, no pleading for life. A quiet fantasy.

Then the guilt flood. Maybe he was a bad person. Maybe only bad people have those types of thoughts. He shared the post.

The couch cushion gave, curled at the edges, as Li sat, releasing a puff of stale air into Saul’s fourth story apartment. On the TV, a Netflix documentary spoke about vertebrate evolution. The show’s host introduced the Myllokunmingia, a fish-like creature from the Cambrian period whose fossil, impressed in shale, contained evidence of a notochord—a precursor to the backbone, the evolution of which would give rise to the most intelligent creatures the Earth has ever seen. For the first time, support had been brought inside the body, allowing for a new way of movement, of growth

The shot changed from a close-up of the fossil, to a three-dimensional rendering of the human embryo. The notochord was clearly visible, extending down through the tail. Li drew his shoulders back. 

“You see that thing I posted earlier, the girl?” said Saul. He sat next to Li, itching the stubble below his chin with calloused fingers, knuckles already beginning to swell. 

“Yeah. Shame.”

“Two hours away.” Saul pulled a pack of American Spirits from the pocket of his flannel. He took one out and held it between his lips, then reached into the drawer of the end table next to his couch. “That’s why I got this,” he said. A handgun. “Too close to the border.”

Li leaned away. In the lamplight, the brown tint of his skin stronger than the white of Saul’s. “What like the cartel?”

Saul shrugged. “Still a few more months until I can buy from a dealer. I couldn’t wait.” He put the gun back, closed the drawer. He nodded to the documentary, now in the transition from water to land. “A great crossing of boundaries

2015

Helicopter Drops Bomb Meters from Woman Filming Attack

The camera followed two barrel bombs dropped by way of helicopter as they made their descent towards a war-torn, poverty-stricken city somewhere in the desert. It took the bombs twenty and twenty-two seconds respectively to make impact. The birds stopped chirping six seconds after the drop, and the city sat motionless, empty. It must be common sense that if you’re in a war-torn city with a helicopter overhead, you go inside. Not that going inside will save you, Li thought, but at least you might not see it coming. He knew that they could hear it right before—he could. Still, waiting three seconds to die must be better than waiting twenty. 

The woman recording stood on her balcony. She was the only noise other than the chopping of air by helicopter blades and the whistle of the bombs at the end. Li didn’t speak her language, but he understood. He guessed ‘Oh Shit,’ was universal. After the bombs hit, the woman was showered with debris, and Li couldn’t see more than one foot in front of the camera. As the video ended, the bottom of the camera screen was obscured so that the wrought-iron scrolls of the woman’s balcony railing came together at their tops and looked like a line of metal hearts standing out against the dust. 

Li wasn’t sure why he clicked on the video—he’d grown to hate them—but now that he had, he couldn’t stop watching it. It wasn’t the bombs or the chopper or the woman. It was the absence: the absence of nature, of people, of feeling. The camerawoman, the outlier, wasn’t enough. Li strained his eyes to look through her lens, searching for movement, for people. If he could see them, maybe he could feel. He thought they should stand in the streets and look up towards the sky. Maybe then it wouldn’t be so easy to drop the bombs. 

Amanda, girlfriend, not the nude model activist, came up with the idea after Li showed her the video. Originally, they’d donated some twenty dollars to a war charity, but they both wanted to do something more personal. She said it’d be easy to find a homeless person. She wasn’t wrong. They found Richard asleep on a park bench downtown. 

Richard’s cheeks pulled back into a smile when Li handed him the bags Amanda had made. Five or six teeth. The wrinkles of his face and indestructible youth of his eyes were unexpected. There were three bags in total. One contained water and non-perishable food. The others, larger, were full of clothes and a blanket.  

“Thank you,” he said. 

“You’re welcome.” Li smiled, and he knew Amanda was glowing behind him.

Another homeless man sat a few yards away. He held the man’s gaze for a few seconds and then shrugged an apology. He studied the pavement on the way back in his car. Amanda took his hand. “You can’t save them all,” she said. 

He put the key back into his ignition and held it there, eyes fixed on his steering wheel. The AC is cold on his skin.

Amanda’s door closed. She looked at Li, blue eyes searching, made wider with eye liner, a perfect balance to the protruding bridge of her nose that Li admired, and so teased her for. 

2016

Body of Refugee Boy Found Near Border 

He was alone, face down in a bed of pine, meters from the razor wire fence that marked Hungary’s border. The body of the boy was five; the boy, long gone, had been much older. The picture was taken from behind, but from an angle where the boy’s face was visible and pure. Behind him the fence lay torn in places, with tufts of bedding and jacket clinging to the blades where others had crossed. Behind the fence, a sparse and wild forest, the same forest the boy died in, marked only by the razor wire. The boy had no cuts on his face or arms or hands. They’d claim it was the trees that disoriented him. 

Some news agency tweeted the title of the article, Refugee Boy, as if it were music from the syrinx of birds. Li thought maybe that’s what made it beautiful. But Refugee? The least we can do, Li thought, is disassociate them from that title when they die. Certainly, they are no longer seeking asylum. Birds sing for two reasons: to attract a mate through a demonstration of vitality, ego; and to mark their territory. 

Li had never set foot in a church before. He didn’t like it. He didn’t like the smell, candles and old bibles. He didn’t like the chandeliers or the windows. He didn’t like how large it was. He didn’t like that the minister wore robes while everyone else wore clothes. 

He’d cancelled his plans with Amanda to come here, to ask the minister to pray for a boy he knew who’d died. 

“I don’t know what else to do,” Li said.

The minister smiled and said, “Let God.” 

The entire church prayed, the building breathed with the words. It made goosebumps on Li’s skin. 

While they prayed, Li mourned. His skin tingling, the energy of love you need a body to feel. Prayer wasn’t enough. It could not help the boy. It would not help Li. There was no room in Li’s heart for it. There was only room for mourning. 

Today

The first thing Li noticed, at Saul’s new house, was the open door. They had been on the phone not two minutes earlier. Someone had come to the door soliciting, and Saul ‘had to deal with him.’ What he did not know, was how long the solicitor had been walking around beneath the sun, three hours. Nor did he know what the solicitor was selling, his mother’s homemade jewelry. Li did not know what Saul said to the solicitor, “Yardwork’s done, bud,” or that he laughed while he said it. He knew only of the solicitor and the open door—usually closed. Li told Amanda to wait in the car. 

Inside, Saul lay on the floor near the backdoor, his face bloodied. The solicitor—above Saul, looking at Li—his tattoo, MAMA written across his bare chest on skin more confident in its brownness. A dress shirt ripped and on the floor. Saul’s gun between them. MAMA charged. Li was faster, got there first. MAMA stopped when he realized he couldn’t get to the gun, palms out. He said nothing, body racked with imperceptible shakes. Amazing—the power. Enough to slow time.

The lines of Li’s palm etched the textured polymer grip of Saul’s M&P.40, sweat engraved grooves fusing the lines. Then the muffled sounds of Amanda somewhere behind him. Li’s back straightened, his blood warmed.

He fired four times. The bullets tore twelve hundred feet per second. Two hit. One in the hand, the other in the head, just above MAMA’s left eye. MAMA fell to the floor. Blood painted itself like lilies on the white tile of Saul’s kitchen. Iron in Li’s mouth gave him blisters. 

The chiming of hollowed out metal in the wind, feint in Li’s ears, took him home. He felt the grass of his yard, soft against his feet. He felt the music of the breeze, harmonized with the laughter of children playing. He felt his crush’s fingertips on his arm. He felt the wasp’s stinger sink into his ankle, a flash of light, searing pain. He heard his friends, concerned, as they called his mother. She held him in the grass, traced her fingers gently across his leg, and told him she loved him while he looked up at the sky. Then he was on Saul’s white tile again, surrounded by red lilies, petals leafing. 

MAMA had died. He couldn’t look away, the black metal of the gun still gripped in his fingers. His nails were so dirty.  

Amanda slumped to the floor behind Li, sobbed. “It’s gonna be okay,” she said. Sirens were fast approaching. 

Saul nodded.

“No, it won’t.” Li whispered. 

Tomorrow

Li stands outside MAMA’s door. The police woman said his name was Alex. 

The brown soles of his vans meld into the welcome mat. His head presses against the screen. His index finger hovers, quivering near the doorbell. The porch light is on though it’s day, and roses line the windowsill. Li holds white lilies, in the hand at his side. He remains for a few breaths. A neighbor in a lawn chair gazes at him. The door opens, and Alex’s mother stands before him. She remembers Li from the day before. She is not crying now, but her eyes are swollen. 

She says nothing, just stares at Li, at the lilies. She wears a sun dress, once yellow, now brown and tattered like her skin. The silence holds for a time. Ten seconds, maybe more. Then she opens the screen, invites him in. She rubs the dress between her fingers. “He gave me,” she says. 

Li sets the flowers on the coffee table. She had made no movement to take them. She invites him to sit on the couch with her and they sit. The room is small. Alex is everywhere, in the pictures, the floorboards. In one of the pictures, Alex plays with a small toy dinosaur. It’s blue, with shades of purple. Li begins to cry. “I wanted to say I’m sorry.”      

Alex’s mother pushes his chin gently toward her. “You no kill,” she says. 

Li doesn’t understand her meaning. 

“Not you,” she says. She pulls Li in for a hug. The kind only a mother can give. She nods, smiles slightly as Li sobs. “I feel,” she pulls back, puts her arm on Li’s chest, “he in you now.” 

Li walks home, keeps pace with the setting sun. His mother prepares dinner, the smell of pot roast in the air. Amanda greets him with a kiss on his cheek. 

“Saul left this,” she says. A letter to say thanks. “How’d it go?”

Li looks at the letter, sets it down. “It went.” 

At night, Li goes into his backyard. He opens himself, a series of deep inhalations. He removes his clothes. He leans, back to bark, against his oak tree, much larger than he remembers it. He looks up through the branches, weightless, through the tangled canopy of leaves. He sees the light of a star, unreachable even as skin absorbs it, even as his cornea bends it. He manifests Alex’s face, focuses his energy, and sends it to the cosmos with love and an apology. It’s not enough.

 

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