Only the Necessary Suffering | Wendy Call

38 mins read

History of present illness—A 45-year-old male with no significant past medical history. His symptoms initially began
on Sunday with left ear pain and tooth pain. Also on Monday, he developed a rash over his left face.

My mother looked around the room, fixing her watery gaze on each of us in turn; Aram sagged in the rocking chair; Kate, Alan, and I sat stiffly on low stools; my father fussed with his camera and tripod.

“Well, aren’t we a lively bunch,” she said.

Mom was so rarely critical of her family; this sarcasm was well deserved. How could we fail to muster joy, or at least levity, on the last Christmas Eve of my mother’s life? She had left her bed for the first time in several days—summoning almost unimaginable strength to do so. In one week, we would reach the far end of her four-to-six-month prognosis.

Even as we disappointed her, she smiled at us.

For weeks, I had wondered whether I should give Mom her Christmas gifts early. Each time, I decided that I could wait. Even in making the decision to err on the side of hope, I had never allowed myself to imagine the gift-giving ritual. I wasn’t purposefully living one day at a time—as the hospice nurse kept advising me. An ever-present fog of anxiety, sadness, and fatigue allowed me to imagine only a few hours into the future.

It had been more than three months since I’d chosen Mom’s gift: a hand-loomed cotton tunic, lushly embroidered in a red-and-black geometric design. Even when I had chosen it from the display of dozens, I had known I was choosing it for myself. As I held the tunic up to my body, selecting the only one with colors that complimented both Mom’s olive and my pink skin tones, I had hoped that she might wear it once.

My mother sucked each quarter-mouthful of her Christmas Eve dinner into mush, swallowed gingerly, and smiled. Aram did the same, chewing only on the right side of his mouth. He had a screaming toothache and we hadn’t found a dentist willing to see him on Christmas Eve. My parents’ dentist had prescribed painkillers over the phone and we raced it to the pharmacy moments before it closed for the holiday.

Mom sat on the sofa, her slender neck muscles straining at the effort required to stay upright. She unwrapped each of her gifts, savoring every fold of paper and knot of bow. She ran her hands lightly over the smooth cotton and nubby embroidery of the tunic folded in her lap. Once the wrapping paper lay in a large tumble on the cream carpeting, she turned her head slowly to look each of us—husband, son, daughter-in-law, daughter, son-in-law—in the eye. Five times, her eyes came into focus and her face opened into a smile. That smile was the only thing that cancer had not changed; it still seemed to be lit from within. “Thank you for my gifts.” She hesitated, as if struggling to remember a line memorized long ago. “I love all of them.”

I don’t remember what any of us said in reply. I don’t remember whether we wrapped her in hugs, or kissed her, or even helped her back to bed. I don’t remember what we did with the rest of the evening. I remember only that regret consumed me as the last holiday of my mother’s life slipped away from me. From all of us.

12/27/2006 08:30 am—Diagnosis 053.9—Herpes zoster without mention of complication—Diagnosis 522.5—
Periapical abscess without sinus

For my mother, Christmas was the most important event of the year. I never missed going home for it, though I lived on the other side of the country and had been an atheist since age sixteen. Aram had grown up in a secular Muslim household and visited a Christian home for the first time as a teenager. He had joined our family holiday for a decade, wearing the furry “Christmas Grinch” hat when it was his turn to hand out the presents that my mother piled around, under, and behind the large, fake tree. Sometimes, he even attended the midnight Christmas Eve church service with my family, although he thought “that whole eat-the-body and drink-the-blood of Christ thing is creepy.”

On the last Christmas morning of my mother’s life, I awoke with a deep ache in my chest. As I had every morning for months, I wondered about the ache for a second, then remembered.

Aram’s pillow was smooth and plump; he’d never come to bed. I shuffled down the hall, past my parents’ bedroom, to the front room. Wrapping paper, plastic packaging, and ribbons lay in drifts on the floor, left behind in the receding wave of my mother’s last Christmas Eve. The coffee- table books, bread maker, sweaters, plastic mixing bowls, flannel pajamas, silver necklace, and measuring cups—so many pointless objects—lay where we had abandoned them by our chairs. Aram still sat in Mom’s rocker, his body folded awkwardly into the small chair. He leaned his head against his fingertips, one elbow resting on his jack-knifed knees. “I finished it,” he said, nodding
gingerly toward the closed book on his lap, one of the gifts he’d opened. “It hurts too much to sleep.”

This should have alarmed me. Instead, I nodded, mumbled something empathetic, and plodded ahead with my day. I prepared the turkey, stuffing, roasted potatoes, and green beans, lining up casserole dishes along the kitchen counter. I helped Mom from bed to bathroom and then washed her body while she steadied herself, clutching the sides of the tub. It was so hard for her to sit up. Mom said she needed to rest after the bath, so I helped her back to bed. She slept away the afternoon. I moved the foil-covered dishes from counter to fridge. She slept through the night and into the next day.

Much later, I would find in my notes from our first visit with the hospice nurse, months earlier: “Don’t waste all your energy on a bath.”

As Aram and I lay in bed on Christmas night, a line of welts grew along his jawline and oozed rusty liquid. The infection was progressing so quickly that his skin changed form and color as I watched. The pills that Mom’s dentist had prescribed could not touch his pain. “Do you think your body is expelling the infection from your tooth through your cheek?” I asked. Aram could only shrug at my absurd explanation, too exhausted to stay awake but in too much pain to sleep.

That was my wish: that a body could heal itself, could release what it no longer needed.

On the morning of December 26, Aram was sluggish with pain, his left cheek bloated and crusted over with sepia pus. His transformation finally alarmed me. My father took him to an urgent care clinic, where a holiday-weary doctor diagnosed him with shingles. Of course. The anxiety of our sickhouse had manifested in an stress-triggered illness. Aram was too contagious to stay at my parents’ home, or with anyone spending time with Mom. My father drove straight from the health clinic to the hotel closest to our house. He left Aram slumped in the passenger seat while he paid for the room. Then he led Aram down the back hallway; no reasonable hotel employee would have
allowed someone so obviously ill to stay.

Through the afternoon and evening, and all the next day, I drove back and forth between house and hotel, stopping each time in my parents’ laundry room to strip my clothes and load them into the washing machine.


12/28/2006—Shingles are worse. Came in yesterday, may need more pain med. Ear also swollen has ear drops but can’t get them in. Mildly ill; in pain. Large area of Zoster involvement w/ secondary infection uncontrolled by Augmentin. To ED for IV antibiotics ? culture

Another morning came and the left side of Aram’s face bulged to more than twice its normal size, forcing his left eye shut. From his ear to his lip, brown welts and purple bruises wept green pus. I led him down the hotel’s back hall and down the stairs. He staggered, pain-drunk. I braced his body between my hip and the wall and we inched toward the exit.

I drove the route that had become automatic: from my parents’ neighborhood to the medical center. As I pulled onto the familiar campus, the Emergency entrance sign loomed. Every time I’d passed by that sign, not turning toward it, I had whispered a word of relief to myself. Now, I was turning toward the sign, not with my mother, but with my husband.

As soon as the receptionist caught sight of Aram’s face, he was directed to a gurney and wheeled into a private room. “Has he traveled out of the United States in the last six months?” one of the nurses asked me. I listed the countries: Mexico, Chile, South Africa, Tanzania. I couldn’t remember them all. Her eyes widened. She and several others drew vial after vial of his blood, wiped swab after swab over his angry sores. With each new needle and swab, they asked his permission. Each time, Aram nodded and mumbled, “Uh-huh, but can I have a painkiller?” After about ten minutes, they hooked him up to an IV. I stepped forward from my spot in the corner of the room. “Does the IV include a pain killer?” I asked.

The nurse shook her head.

“So, what is it?”

“Antibiotics and other stuff.”

“But, isn’t shingles viral?” I asked, trying to keep the alarm out of my voice.

She shrugged her shoulders and turned away from me.

The nurses carried away the trays full of vials and swabs and left us alone in the examination room. Aram moved in and out of sleep, moaning, muttering, occasionally asking for pain meds. “They will give you one as soon as they can,” I repeated, thought I had no idea whether I was telling the truth.

Nearly three hours passed before a nurse injected morphine into Aram’s right arm and he sank into silence. Two orderlies wheeled his gurney out of the room and parked it along the wall, one of a long line of gurneys that held moaning patients. I squeezed into a narrow space between Aram’s bed and a doorway. A new gurney appeared in the hallway. On it, a man sat upright; his chest had been ripped entirely open. He made no noise as he looked around, wild-eyed. A swarm of white coats buzzed around the man’s yawning ribcage, knocking Aram’s gurney into the wall. Aram startled awake and blurted, “What is all that noise?”

I burst out laughing. (I have always responded to intense stress with irrepressible, inappropriate laughter). I put a hand on Aram’s arm to calm him. “Aram, we’re in the emergency room.” He stared at me, uncomprehending, then slipped back into an opiated haze.

A few hours later he stirred, grabbing his gurney’s metal handrail and rattled it angrily. “More morphine!” he said, with surprising force. I found a nurse but she shook her head; it was too soon for another dose. I went back to my post by Aram’s gurney, not knowing what else to do.

Dr. Matthew Schwartz, a pediatrician stuck with holiday ER duty, decided Aram should be admitted to the intensive care unit. The doctor’s diagnosis: Ramsey-Hunt syndrome. The shingles virus had attacked the second branch of Aram’s fifth cranial nerve. It could move to the first or third branch. The dots on his forehead indicated that was possible. I didn’t know what the first or third branches of the cranial nerve did, but I worried they might control vision. I didn’t ask. I didn’t want to know. I would learn much later that I was partly correct: the first branch controls our eyelid, eye muscles, tear duct, and pupil. If the nerve doesn’t function, the eye doesn’t, either.

Dr. Schwartz was concerned by the severity of the infection around Aram’s mouth. “Has anyone looked in your mouth?” he asked us. Could the answer possibly be “no”? Could all those ER personnel have failed to do something so obvious? We couldn’t remember.

Late in the afternoon, Aram was moved to a private hospital room with a red warning sign on the door, marking it an isolation unit. The doctors hadn’t been able to determine the cause of the purple and green infection that had erupted on top of his shingles blisters. Morphine, antibiotics, and antivirals flowed into IV in his arm. I went home to my mother.


12/28/2006 10:00 am —Admission physical exam: Exam is remarkable for a large erythematous rash over his
entire left face, spacing [sparing?] his eye. His ear was so swollen that he [sic] had obliterated his canal and count
[could?] not actually hear from the ear.

When I returned to Aram’s isolation room, he was awake. While I’d been gone, Dr. Schwartz, the pediatrician, had asked permission to give Aram an HIV test. The doctor had been so nervous and evasive that it took Aram several minutes to figure out what he wanted. Finally, Aram had to ask, “You want to do an AIDS test?” The doctor nodded, without speaking. “Fine,” Aram said, waving the blushing young man away.

After telling me this story, Aram fell sleep. Shortly before midnight, an orderly came in, ignoring the “contact precautions” signs and stack of white gowns. He unhooked Aram from the tangle of monitoring machines.

“What’s happening?” I asked. “Where are you taking him?”

“CT scan,” the man grunted, not looking at me. He hooked Aram’s IV bag over a wheeled pole, released the brakes on the hospital bed, and shoved it toward the door.

“Can I go with you?”

The man mumbled something that didn’t sound like “no,” so I followed him, stopping to peel off my stiff white gown and push it into the overflowing trash bin.

The orderly slammed Aram’s bed against a pair of fire doors in the hallway to push them open. Aram moaned.

“Please don’t do that,” I said. “Let me open the doors.”

He walked faster, said something too low for me to hear, and jammed Aram’s bed against the next set of doors. The crash, and searing pain, of the bed against door after door would be one of Aram’s only memories of his hospital stay. Down the elevator, underground, I followed the orderly through the hospital maze, until he shoved Aram’s bed through a final door, into the scanning room.

I was left alone in the sudden silence of the underground hallway. Not knowing what else to do, I sat on a chair next to the door where Aram’s hospital bed had disappeared. Moments from the day flickered through my mind: the wild infection on Aram’s face, the pediatrician’s face paling as we listed the countries Aram had visited recently, the blood vial sent off for an HIV test, and now, a mysterious CT scan.

My mind came full-stop at a question: Might Aram die? Throughout the six months my mother had been ill, I’d been preparing myself to be orphaned. I was, after all, thirty-eight years old. But widowed? No.

Half an hour later, the orderly plowed Aram’s hospital bed back to the critical care unit; I ran ahead of him to push open the doors. As Aram slept deeply, I wandered the halls, walking the hospital wing’s long loop again and again, listening to low moans and mumbling. The hum and beep of machines. Night-shift nurses chatting and laughing, then answering patient call buttons, irritation and boredom in their voices. Other people’s lives blinked from half-open doors. A skeletal woman in a tiny hospital gown struggled to stand, her IV pole wobbling beside her. A bald man stared at the acoustic tiles over his bed.

So little separated these people’s experiences from my mother’s. The home hospice staff had insisted we place large signs by each phone in my parents’ house: “Call hospice first! Not 911!” Otherwise, they warned us, Mom would end up in the hospital. You don’t want that, they had told me, without explanation. This was why.

Another day passed and Aram’s infection calmed. He was taken off IV medication only hours after Mom was placed on it. The morphine stopped running into Aram’s body and started running into my mother’s. I shuttled back and forth between Aram’s bedside and my mother’s, stuffing more clothes into the Maytag, stuffing more white gowns into the garbage bin.

James Brown died early on Christmas morning. His funeral blared on the large television that loomed over Aram’s bed. The funeral went on and on as Aram peed into a funnel, lapsed in and out of consciousness, and struggled to sit up.

Pallbearers carried the five-hundred pound, 24-carat-gold-plated coffin of the Godfather of Soul into Augusta, Georgia’s James Brown Arena. Reverend Al Sharpton welcomed Michael Jackson onto stage. The crowd screamed for a long moment, a single voice of anguish and excitement pouring from thousands of lungs. Michael Jackson eulogized his hero, telling the assembled mourners that watching the Godfather of Soul’s performances as a child had made him realize, “That is what I want to do for the rest of my life.”

Aram ate pudding and I thought about funeral plans as we both stared silently at the TV screen. Aram would remember almost nothing from these days. I would remember far more than I did from my mother’s last Christmas Eve.

Though my mother was no longer able to speak more than scattered words, she made it clear that she was worried about Aram. From the first time she had met Aram, a dozen years earlier, they had shared a close bond. Not long after my mother’s terminal diagnosis, I had picked up a discarded copy of USA Today, while waiting at the airport for yet another flight between my West Coast home and my parents’ East Coast one. The newspaper had published a poll that reported “the top minorities people wouldn’t want their children to marry.” Number 1: atheist. Number 2: Muslim. With her Iranian-American son-in-law, my mother had both. If she had any concern about that, neither Aram nor I ever heard it.

A drumbeat of why-why-why pounded in my head. How could this be happening? How could Aram be in a hospital isolation unit at the same time my mother lived the last days, perhaps the last day, of her life?

The man who emptied the garbage bin in Aram’s room came by more often than the nurse did. He lifted my spirits each time he poked his head and arm into the room to grab the can, his smile filled with empathy and light.

Off the morphine drip, Aram began to speak in full sentences again, just as my mother fell almost silent. He convinced me I should spend the night with my mother, not with him, now that he was lucid enough to push his own call button. I kissed him goodbye on his healthy right cheek and left him staring at the television bolted to the wall, as women in feather boas and men in shiny pants hopped and shimmied and shouted goodbye to the man they loved.


12/28/2006 12:04 pm—Now lesions crusting crossing dermatome, swollen jaw, hard to hear out of ear with motion
sickness, +fever/chills. Here with partner.

My father sat at the edge of their bed, sobbing, as Mom sat on the portable toilet the hospice nurse had left at bedside, a few days earlier. Mom stared past Dad’s stricken face, her eyes vacant and her hands slack in his trembling grip.

Later, I would understand that my mother had begun the final phase of her life, what doctors call “active dying.” Dad and I lifted Mom back into bed—how light she had become—and I sat on the floor cross-legged, between her side of the bed and the portable toilet.

Sometime after midnight, I left Mom’s bedside and went to sleep in the guest room. I opened my eyes to my father’s low voice. “Wendy?” The numerals on the clock glowed behind him: 4:26 am. It was New Year’s Eve.

“Dad.” My voice was toneless. I focused on my father’s grief-filled face as my mind shook off sleep and I remembered myself: I am sleeping in my parents’ home. My father is waking me because he does not know what else to do. My partner is in a hospital bed ten miles away. My mother will never get out of bed again. There is nothing I can do to change any of these facts.

“I think that Mom is going to die soon,” Dad said.

No. I thought. Aram is not here. My brother is not here. I did not speak. I got out of bed and followed Dad back to their bedroom.

I sat on the floor by Mom’s side of the bed and listened as her breaths rattled the dawn. When the clock ticked past six, I called Kate and Alan’s house. My sister-in-law’s “Hello?” was filled with sleep. I opened my mouth to speak, but only tears came out. Kate understood my voiceless pause.

An hour later, my brother and sister-in-law sat in my parents’ living room, their faces flat with confusion and fatigue. I returned to Aram’s hospital room. The red “isolation unit” warning sign was gone from his door. Aram didn’t know whether the doctors had already done their morning rounds. He didn’t know how long he had been awake. I sat down to wait. Moments of my mother’s life ticked past. Dr. Schwartz came in the room, the pediatrician of the jangled nerves and fear of the word “HIV,” here again, stuck with New Year’s Eve duty.

I stood up. “Will Aram be able to go home today?”

Dr. Schwartz wasn’t sure.

“He needs to go home. My mother is dying and he needs to be there.”

The doctor mumbled something I couldn’t make out and said he would be back later. I heard the thunk of Aram’s heavy medical file in the locked metal bin outside the door. I peeked out the door and saw the bin had not quite shut; Dr. Schwartz had left in a hurry. I heaved the metal box open and went back into Aram’s room. I flipped through the binder that documented the last four days of Aram’s life. Of my mother’s life. Clostridium difficile toxin, HIV-1 antibody test, ear bacteria culture, blood bacteria culture, and other unpronounceable cultures and scans had come back negative, negative. All negative. I couldn’t find any reason for Aram to remain in the hospital. His medications were all pills. He could now walk to the bathroom. There were no children in my parents’ house. It did not matter if he infected my mother—she would be dead before another infection could kill her.

The nurse, whose shift had just begun, walked into the room. Her eyes locked on the red binder in my hands. “What are you doing with that?”

“I’m reading it.” I walked past her, dropped the binder back into its bin, and flipped it shut. The lock clicked. Standing at the foot of Aram’s bed, I met her eyes. This nurse had not been kind to us. The last time she’d answered Aram’s call button, more than fifteen minutes after I’d pressed it, she’d snapped, “I’ve got four patients here.”

“He needs to go home to his mother-in-law. She is dying. Maybe today. He needs to be there.”

A wave of empathy passed over her face; her irritated squint softened.

“I need you to help me,” I said. “Can’t we get him released from the hospital?”

The nurse sighed and left the room.

A few minutes later, Dr. Schwartz returned and told me he wasn’t sure whether Aram could be released that morning. My mind spun in wordless circles; my mouth wouldn’t form a reply. The nurse rushed back into the silent room. She looked at the doctor—who was young enough to be her son—as if he were a charming but annoying child.

“Lady said, he needs to go home.”

Dr. Schwartz stared at her. His neck reddened and his freckles shone bright on his pale skin.

She faced him, hands on her hips and her head tilted to one side. “I’m just telling you, Doctor, doesn’t look like she’s interested in any kind of a ‘no.’”

We didn’t bother to stuff our clothes into the Maytag at my parents’ house. Aram leaned into the doorway of my parents’ bedroom and Mom looked up. “Oh, Aram!” she said, more loudly than she’d been able to speak for days. Surprise and relief and joy mingled in her voice. She lifted her limp hand from the bed. Aram held it and pressed his healthy cheek to hers.


Discharge summary—12/31/2006—Principal diagnosis: Impetigo, which was a complication of herpes zoster to the
face.—To home or self care. Medication: Voltrex 1000 mg; Clindomycin 450 mg; Ofloxicin 0.36 drops; Predinsone
40 mg; Oxycodone 5 mg; Magic Mouthwash 5 ml

Through the months of her illness, my mother had told her oncologist, gastroenterologist, physician’s assistant, hospice nurse, family therapist, hospice social worker, husband, son, daughter, daughter-in-law, and several friends that she did not want to remain at home once she became too ill to care for herself. The medical professionals nodded and smiled. We nodded and smiled. The hospice social worker said, “Yes, many people say that in the beginning.”

When Mom finally became that ill, no one raised the topic. People told me that keeping my mother home was the honorable thing to do. They praised my selflessness. But I kept her home because I could not imagine her sleeping in any bed but her own. I could not imagine letting anyone else care for her. I could not imagine her in a thick web of tubes and beeping machines, pitiless fluorescent lights overhead and a useless nurse call button at her side. It was not a generous act, but a selfish one.

As Aram and my mother embraced, a feeling of relief, then one of improbable luck, swept over me, momentarily overwhelming pain. My mother wasn’t suffering unnecessarily, so far as I could tell. Neither were we.

Wendy Call is author of the award-winning nonfiction book No Word for Welcome and co-editor of two anthologies, Telling True Stories and the forthcoming annual Best Literary Translations. She teaches creative nonfiction in the Rainier Writing Workshop and is the Fall 2023 Translator in Residence at the University of Iowa. She lives in Seattle, on Duwamish land, and in Oaxaca, Mexico, on Mixtec and Zapotec land.