Holding Hands in Hell
Dad endured a six-hour operation to remove a five-inch tumor attached to his larynx. Since the cancer had metastasized, he also lost one-third of his tongue and most of his teeth. They took out a section of his jawbone and tried to reconstruct it with soft tissues harvested from other body parts, but the surgery left a permanent crater on the left side of his face.
My sister Barbie and I sat in the teal-wallpapered waiting area until the surgeon came out to tell us that Dad had survived the surgery. When he said that we could see him for just a few minutes, we sprinted toward the recovery room and blew through the double doors. When we saw him, we froze in our tracks.
Dad was propped upright on a gurney surrounded by drip bags and beeping machines on tall, chrome stands. Tubes snaked from his neck and chest sucking pink-red matter from his surgical wounds. His body bucked against two burly male nurses who held down his legs and arms. A high-pitched wheeze escaped from a hole in his throat (the “stoma”) while a third man sucked mucus from his gullet by sticking a thin vacuum tube down the orifice.
After the nurses left, Barbie crept up to the bedside and bent down close to Dad’s ear.
“Everything went well,” she said in a loud whisper.
He laid still, eyes closed and chest heaving, as Barbie placed her hand gently on his forearm. I lurked behind until she pulled me closer and placed my hand on Dad’s shoulder. When my wrist brushed against the plastic tube in his chest, I wanted to run.
Barbie and I stood quietly with our hands on Dad until the nurses returned and told us to leave. Stumbling back into the hospital corridor, we fell back against a white, cinderblock wall as a steady stream of hospital staff and patients flowed by. Barbie grabbed my hand, burst into tears and we both slid down to the teal-and-white linoleum floor as the reek of Lysol and floor wax assaulted our nostrils.
While Barbie wept, I inwardly beat myself up for not fully grasping the severity of Dad’s situation.
“I wish I’d listened better when the doctor told us about the operation,” I murmured.
When Barbie looked up at me and shook her head, I realized that knowing more wouldn’t have changed anything. Dad’s only other option was to live in agony until the growing tumor choked off his airway.
“He wanted this,” I said.
“I know,” Barbie replied. “He wanted more time.”
I had seen Dad’s future in the lives of other throat-cancer survivors in my AA meetings. Their misshapen heads, punctured necks and robot-voices banished them to a life on the margins. When not looked upon with pity or curiosity, their mere presence scared small children.
Since Dad had a long convalescence ahead of him, I called work the next day and told them I wouldn’t be back for a while. I turned in my rental car after Barbie and I moved our bags from the Kahler Hotel to the Raymar Motel. It was cheaper and within walking distance to St. Mary’s Hospital. We visited Dad in the ICU every day until he was moved to a private room.
Barbie and I rode shotgun on either side of the hospital bed while Dad lay silent with closed eyes. Our whispers across his body, the whistle of his stoma and the din of game shows, sports and news broadcasts from a wall-mounted TV became the soundtrack of his ordeal.
We chirped hope into his ears whenever his eyes opened for brief moments. When we told him that the bruises were clearing and his skin was no longer yellow., he just raised his eyebrows and retreated back into the black escape-hatch behind his eyelids.
By the end of the first week, most of the tubes were removed and Dad was mostly conscious. When he drifted back to sleep in the early evening, Barbie and I returned to the motel room. Along the way, we bought bags of junk food at the hospital gift shop and gorged on sugar in front of TV until we passed out.
Some nights we called the local AA office who sent people to take us to meetings These locals were accustomed to out-of-towners spilling out their medical miseries in church basements. Sometimes they called the next day to see if we were okay. They knew that we were anything but okay, they just wanted to make sure that we didn’t drink.
Barbie returned to her family in St. Louis at the end of the second week and I continued to visit Dad every day. Conversation had always been difficult for us and our mutual silence had widened the gulf between us over time. If he answered the phone when I called from San Francisco, all he said was “I’ll get your mother.” Now that he no longer had a voice box, any real communication felt impossible.
As I sat by his bed on our first day alone together, I noticed that he turned the hand closest to me palm-side up. Dad and I hadn’t touched each other much since I was a young boy, so I squirmed in my seat for the better part of an hour before mustering the courage to take his hand. It felt strange at first, but I soon relaxed into this new intimacy and slipped my hand into his whenever I entered the room. Unable to talk, we just held hands and kept our eyes trained on the TV set.
After a few days he grew stronger and sometimes wrote me short notes in a shaky script. When he wrote “Talk to Mom?” or “Call Barbie?” it was a relief to answer his questions and break the long silence.
After a nurse blew into the room and shouted some questions into his face, he pointed at the pad and pencil on the bedside table.
“Tell her stop yelling. Not deaf just can’t talk,” he scrawled diagonally across the paper.
He watched closely as I read his words aloud to the nurse. When she apologized, he gave me a lopsided grin, his first smile since the operation. As we watched a talk show one afternoon, he suddenly squeezed my hand so hard that I almost wrenched it away.
“Are you in pain?” I asked.
He motioned for the pad and wrote:
“Murder.”
I sprinted out of the room and returned with a nurse brandishing a hypodermic. After she had gone, he winked and gave me another half-smile. I nestled my hand back into his as the shot took effect and he drifted off to sleep.
Twice a day, a trio of male nurses came came into the room to hold him down and vacuum out of his esophagus. Rather than linger outside of his doorway, I walked down the hall to a large picture window, stared at the street below and tried not to think of the torture scene a few yards away.
Dad was totally wiped out when I came back into the room. I took his hand again and within minutes he was asleep. As he dozed, I lifted his hand up and examined its well-muscled form with long, elegant fingers tipped with square nails. Glancing down at my own free hand, I saw Mom’s stubby digits with their rounded nails.
As his breath rasped in and out of the stoma, I brazenly admired Dad’s hand. Glancing up at his mangled face, his hand’s pristine beauty touched me so deeply that I forced my eyes to return to the TV. All of my defenses fell away and I cried for my father for the first time in my life.
As tears flowed, I suddenly remembered Dad wanting to tell me something about “the gay thing” (see Three Dollar Bill blog). Whatever those words were, they were trapped inside of his bloody larynx and tossed onto a pile of hacked-off limbs bound for the incinerator.
When I returned to San Francisco after two weeks in Rochester, I was overcome by a surprising shame for leaving Dad alone. When I tried to shake it off by telling myself that he had left me every night of my childhood, but it didn’t do any good. The guilt didn’t leave until my brother-in-law brought Dad back to St. Louis a few days later.
Over the next three years Dad was whittled down with more “procedures.” Follow-up radiation sessions hardened the muscles in his neck into shale. Without any resonating tissue, he never spoke again and he eventually lost the ability to swallow soft foods like applesauce and even his own saliva. He constantly spat into a Kleenex and subsisted on bottles of Ensure poured into a feeding tube implanted in his stomach.
Dad never fully regained his energy after his final surgery: the removal of the lower lobe of his right lung. He spent his days cleaning out his stoma, feeding Ensure into his belly and watching television. Some days Barbie brought her four-year-old son Chris over for a visit. After an initial hesitation, the boy climbed into Dad’s lap and gently laid his head against his grandfather’s chest. The battered old lion stroked the cub’s blond hair as they quietly watched baseball together.
Francis Bacon Portrait Study
Dad was proud of my success as an executive at The Gap. One afternoon, he summoned up the energy to ask Barbie to take him to a Gap store at a nearby mall. After putting on an oxford shirt, khakis and penny loafers for his first non-medical outing, he spent a half-hour in front of the bathroom mirror strategically taping a piece of gauze over his stoma to soften its effect.
As they drove to the mall, Dad poked Barbie’s upper arm at every stop sign and motioned with his other hand for her to turn right or left. After the third jab, Barbie cried:
“Stop poking me, you’re going to cause an accident!”
He didn’t stop until they pulled into a parking spot of his choosing.
During his slow walk across the food court, Dad didn’t see the strangers gawking at him. His sole focus was on finding the store. When he spotted it, he prodded Barbie again on her bruised arm.
As soon as he entered the store, he walked up to a full-length mirror and stood stock still. His clothes hung on him like a broomstick scarecrow. He moved closer to examine the sunken jaw distorting his face like a Francis Bacon portrait (see above). He fingered the damp gauze on his throat trying to get it to stop rising with each breath, exposing his stoma.
Disgusted, he plopped down on a chair and yanked a small pad from his shirt pocket. When Barbie came out of the dressing room, he shoved a note at her.
“Why didn’t you tell me I looked so terrible!”
He never went out again.
Dad died of septicemia at 2:30 AM on January 23, 1989.
During his usual nap-time the previous afternoon, my bedridden Mom and their caregiver heard Dad tearing his bedroom apart … then silence. When the aide rushed in, she found Dad lying on the floor, shivering and barely breathing. She called for an ambulance and then phoned Barbie who dashed right over.
By the time she arrived, the aide had already left with Dad in an ambulance, so Barbie stayed with Mom until her husband could return the aide to our parent’s house. After sitting with Mom for a while, Barbie went into Dad’s room across the hall. The sheets were ripped off the bed, the dresser drawers were pulled open and socks, underwear and tee shirts were strewn around the room.
“The room is all torn apart. I wonder if Dad was cold and looking for a blanket?” Barbie asked after returning to Mom’s room.
“No, I think he was looking for the gun he keeps in his dresser drawer,” Mom replied.
After the aide returned, Barbie went home with her husband to fix an early supper and prepare herself for another medical vigil. As she drove to St. Luke’s Hospital, Mom’s words about the gun echoed in her head. Maybe Dad wanted to go out like a soldier before another surgery sliced off another chunk of his dignity. She remembered a note that he had written a few days earlier that read:
“If I knew it would be like this, I’d never have had the operation.”
Over the last few hours of his life, Dad had a barrage of tests before being transferred from the ER to a private room. Before leaving home, Barbie called and asked for the charge nurse on Dad’s floor.
“Could you please go into Mr. Winkelmeyer’s room and tell him that his daughter is on her way?”
“Well, he’s been pretty out of it. I’m not sure he’ll hear me …” replied the nurse.
“Could you just do it for me, please?” she interrupted.
The nurse laid the receiver on the counter and Barbie heard her footsteps squeaking down the hall. After few moments, she picked up the phone.
“It’s the strangest thing, as soon as I told him you were coming, he regained consciousness. He’s waiting for you.”
“Tell him I’m on my way.”
When Barbie entered Dad’s room, he was gazing at the ceiling through vacant eyes as the Super Bowl played on the TV. She pulled a chair up beside him just as a male nurse showed up to vacuum machine clean out Dad’s stoma.
“No! Get out! You’re not putting him through that!” she shouted.
The man’s face darkened and he stormed out of the room. He soon returned with a doctor who started in on a lecture about how Dad needed his airway cleared.
“No! No way!” Barbie insisted.
Had he been more with it, Dad would have given her one of his half-grins.
Barbie camped out next to Dad for a few hours while he went in and out of consciousness. When an older nurse woke Dad up to check his vital signs, she smiled, nodded at Barbie and said:
“You’re lucky to have such a wonderful daughter.”
As she took his pulse, Dad tapped his temple with his free index finger to say: “I know”.
When he regained a bit of strength, he wrote a note to Barbie.
“Glad you brought me to St. Luke’s. Where you kids were born.”
A little later he wrote another.
“Call your brother.”
Before falling into permanent unconsciousness, he scribbled his last words.
“Thank you.”
Barbie stayed and watched his chest slowly rise and fall until she had to get home. She kissed his hand, laid it on his chest, started for the door; then stopped. She returned to the bed and bent down to Dad’s ear.
“You can go,” she whispered. “I’ll be okay.”
He died an hour later.
I got the call on Monday morning and caught a plane to St. Louis the next day. When the funeral home delivered Dad’s cremated body (“the cremains”) to my parents’ house, Barbie and her fourteen-year-old daughter Katie became fascinated by the white ash and bone fragments in a medium-sized plastic bag. I had seen the ashes of San Francisco friends many times before and they all looked the same to me.
Barbie and Katie ladled some of the mixture out of the bag with a large kitchen spoon and sprinkled it around a Dad’s favorite tree in the backyard. Since Dad had always wanted to see the California coast, I scooped a handful of him into a baggie and put it in my suitcase to spread on the rocky beach at Land’s End.
Dad’s burial service on a not-too-cold, late-January morning was small and brief. Aunt Deedee came down from Minnesota and stood with Barbie, Katie, a few of Dad’s friends and me in the garden-columbarium outside of St. Michael’s and St. George’s Episcopal Church. Mom was bed-bound at home with her aide and young Chris stayed home with his father.
A stranger in a collar said a few rote prayers over the dust of a man he had never met then nodded for Barbie to place the brass rectangular urn into an open niche. The priest then handed me an American flag folded into a triangle and I moved toward the hole in the garden wall. I rested the flag on top of the metal box knowing full-well that my father had been both a heroic soldier and severely traumatized by the war. As I backed away from the grave site, I silently hoped that its weight was easier for Dad to bear in the tomb than it had been in life.
Everyone came back to the house to pay their respects to Mom and have a small lunch. Afterwards, the aide cleaned up downstairs while I sat in Mom’s bedroom and described the short funeral service. Barbie and Katie disappeared into Dad’s room, threw themselves on his bed and sobbed into his pillows.
“Can’t they control themselves, for God’s sake?” Mom asked with a frown.
“I guess they’re just beside themselves with grief,” I replied.
“I can’t imagine why they’re so upset. He was my husband!”
I sat quietly next to Mom and waited for the keening to stop.
When I returned to San Francisco, I put Dad out of my mind. Three months later I was consumed by a baffling rage. It took me a few weeks to realize that my anger sprang from the fact that I would never have the kind of connection with Dad that had seemed possible when he said that he wanted to talk to me about “the gay thing.”
I felt cheated out of my only chance to have a part of him that only we could share. As the AIDS epidemic wore on in San Francisco, it occurred to me that we had something else in common. I thought back to Dad’s words when, after recounting one of his drunken war stories, he stared off into space and muttered:
“I should be dead.”
Like him, I was mystified by my own survival when so many good, young men had died. If he never got the chance to tell me about “the gay thing, we could have at least shared our shell shocked pain. For once in our lives, we might have even comforted each other.
POST SCRIPT: I carried an I.O.U into the world after leaving my childhood home. Since life had dealt me such a bad hand with my scary, absent father I figured the universe owed me better relationships with men in my future. As a gay man, this notion became the subconscious template for my romantic relationships. I spent decades projecting onto others the qualities that I so desperately wanted from Dad. Since my partners could never live up to a love that would erase my past, my affairs always failed.
When I spent time alone with Dad after his surgery, my insistence on retribution for the years of his abandonment began to fade. When I looked at him in the hospital bed, I no longer saw the monster of my youth, but a broken, suffering man. I saw a person with feelings, a person worthy of my love and compassion.
Years after Dad died I realized that the tears that I shed in the hospital were not out of pity, but out of love. I had imprisoned our innate, father-son love inside a dark, hardened chamber of my childhood heart. Once I felt that filial love again, I stopped dwelling on how much Dad had neglected me. Instead, I began to wonder how badly I had hurt him with my years of silent scorn. That was when the forgiveness began.
In turning my focus away from what I didn’t get from Dad, I realized that love isn’t a scarce commodity like toilet paper in a pandemic, but a place to come from in myself. In letting go of pay-back love, a space opened up inside and made room for me to truly love another person.
Today I love my husband as best I can (with mixed success) and I always finish phone calls with family and friends by saying “I love you.”’ When Dad used what little energy he had left to write “call your brother,” I know now that it was his way of saying “I love you.”
In the end, I-love-yous are just words. Loving thoughts and actions require a lot more effort. Thanks to a strange calculus that I’ll never understand, whenever I try to be loving with others, there is always plenty of love to go around.
POST-POST SCRIPT: This poem came to me as I was writing this piece.
WONDER SHELL
After years of trying to find it,
Forgiveness appeared in my hand one day.
It looked like the magic clamshell from my childhood,
A miracle encased in hardness,
Locked up by the flimsiest strip of paper.
When I dropped it into a glass of clear water
And left it to its own devices,
The delicate seal gave way
And dissolved into time.
The crustaceous prison opened
As a trail of flowers, so pink and exquisite,
Rose unstoppably toward the surface.
It stayed tethered, by the slimmest thread,
To the hollow, unneeded shell
Resting patiently below,
Anchoring its buoyant inner beauty,
Without weighing it down.
