The first time I was in the presence of a dead man, I wasn’t afraid. He had been terribly sick, and everyone knew he was nearing the end. What I noticed most of all was how still his body was: there was no soft up-and-down motion of the chest and belly that parents instinctively look for when they check on their babies during the night. His skin was ashen and tinged blue. His family members stood silently at his bedside. I remained in the room for only a few minutes while offering my condolences.

The next time was when I escorted a man into the viewing room where his deceased brother’s body was laid out. The man began to punch the air violently, and I took a step backward, a little afraid I might get in the way of his fists. Tears flowed down his cheeks, and he rocked forward and back, wailing.

“Can I give you some privacy?” I asked, poised to step out.

“No, please stay. You can stay.”

The man seemed to need a witness to his grief. So I stood by and witnessed his tears, the rapping upon his chest with his fist, as if to knock the pain out of himself. I watched him gradually quiet down, then reach out and touch the emaciated cheek of his brother. He stroked the dead man’s forehead tenderly and kissed his face, telling me how his brother had always been as strong and healthy as an ox, how unexpectedly he’d gotten sick.

“He was such a good brother to me,” he said. “Such a good brother . . .”

“He has a kind face,” I said. “Anyone can see that.”

The man smiled and took my hand. “Thank you,” he said.

 

I often encounter people who are at the end of life in my work as a hospital patient advocate. I was drawn to this work as a way to shine a light on my fears, death being one of them.

Each dying person has his or her own way of leaving the world, and each mourner has his or her own way of dealing with being left behind. I have watched a gray-haired, newly widowed woman grasp her dead husband’s foot and plead, “Don’t go! You said you’d never leave me. How can this be happening?” I have met another gray-haired widow who wore her wedding ring on a heavy chain about her neck. She told me that in all their years of marriage, her husband had never once taken her in his arms and told her that he loved her or that everything would be all right. “I’m glad to be rid of him,” she nearly spat. “If only it had happened sooner, I could have had a second chance at life.”

I have seen a husband grow angry at the doctors, at the world, when his wife was pronounced dead. “Keep everyone away from me!” he cried. “If Jesus himself wants to talk to me, I swear to God, you keep him away!” He finally unclenched his fists and pulled his wife’s hairbrush out of his pocket. It still had a few strands of her hair in it. He began softly brushing the hair away from her face. No one dared disturb him as he remained at her side, sighing and brushing.

As a healthy young woman, years before I came to work at the hospital, I gave death little thought. Then my firstborn son, Joshua, was diagnosed with a malignant brain tumor right about the age when most babies are taking their first steps, and the fear that he might die smacked me in the face. His father and I brought him home from the neurologist and sat in the parking lot in front of our apartment for a long while, not wanting to get out of the car. The next day we would be taking our baby to the hospital, and he might not be coming home again. I think we wanted to believe that if we just stayed there, motionless and silent in the car, everything would remain as it had been.

After we went inside the apartment, I held our son. I got out the tape recorder and sang to him and recorded his cooing noises, the little babbling sounds he made, and a baby chuckle or two. I got out my sewing scissors and cut a lock of his hair and placed it in an envelope. I held him close for a long while — as if by that gesture I could protect him — and inhaled deeply, memorizing the scent of his skin.

I was in a state of continuous mourning during the invasive surgeries and brutal chemotherapy treatments that followed. I wondered what the stream of young residents thought of me, the weeping mother, as they stood there and discussed their “case” in quiet, clinical tones as if I weren’t in the room. Sometime during the complications, fevers, infections, and subsequent surgeries, I was transformed from a courteous, civilized human being into a fierce mother tiger, complete with claws and fangs. I stopped crying and started throwing people out of the room, or giving them such a hard time that they wished they had never come in. I summarily fired the surgeon who’d sutured through the chemotherapy catheter she’d inserted into my son’s chest, rendering the device useless. I regarded all unfamiliar nurses or physicians as a potential threat until they proved themselves otherwise.

Midway through the chemotherapy, Josh was so weakened that he had to be put on a feeding tube. Worried that he couldn’t tolerate the rest of the chemo, one of the doctors visited me at the bedside to discuss measuring him for radiation treatments as a backup plan. I told him to get out of the room. I would take my son out of that hospital and dig up wild roots in the desert to cure him myself before I’d let anyone radiate his brain. Thankfully, Josh’s condition improved, and we never had to discuss the backup plan again.

During the two years that it took to complete Josh’s chemotherapy, there was a period when I woke each morning and seemed to sense death close by. I saw it all around me. A flower wilting in the garden or the evaporation of the morning dew on the grass could cause me to break down. Nothing lives forever, but it seemed wrong that a child should have to face death. Death was for people who had lived their lives, tasted happiness, made mistakes, and had a chance to make amends; it was not for babies.

Wanting to understand the enemy, I began reading books and asking doctors and nurses about the process of dying. I needed to know what could happen to my child if his treatment didn’t go well. As his mother, I was supposed to test the waters for him, to have some idea of what could be ahead. I wanted to know about the final moments of life: Would it hurt? What shuts down first: the beating of the heart or the breathing of the lungs? Would it be fast or slow?

One day a fat envelope arrived in the mail. It was from the secretary of a church I no longer attended. I barely knew the woman, but apparently Josh was on her prayer list. Her note said she thought I would appreciate the enclosed article. That was all.

I read the article, which was about life after death. It said the body is like a womb for the spirit: just as a newborn baby doesn’t need the womb after it is born, so the spirit sloughs off the body at the moment of death and passes into the next realm. As alienated as I felt from churches, this concept appealed to me. It didn’t stop me from feeling sad or afraid, but it helped me make a kind of peace with what I could not control.

Josh completed his treatments, and in the years to come I would watch him grow stronger and eventually walk, go to school, play baseball, hold his baby brother.

Two Christmases ago a baby girl came into the emergency room. She wasn’t breathing. The doctors and nurses worked on her for a long time, but she didn’t make it. I sat stroking her father’s back as he sobbed. There was nothing any of us could say or do to fix it.

The rest of the family filtered in: the mother and the baby’s older brother, just a toddler himself; an aunt, an uncle, a cousin. The nurses went to work, gently cleaning and wrapping the baby’s body, placing a new pink stocking cap on her head and laying her in her mother’s arms. Then came the ritual cutting of a lock of the baby’s hair, the ink prints of the hands and feet. The nurses softly murmured, “What pretty hair she has,” and, “Look at her delicate fingers.” The baby’s brother, not understanding all the commotion, gave a tug on his sister’s gown. He must have thought she was sleeping. Someone handed him a teddy bear. We all stood there at the edge of the family’s grief, bearing witness with our quiet presence.

When I went to a recent Andrew Wyeth retrospective in Philadelphia, I should not have been surprised that my favorite painting was of a dying woman: Wyeth’s neighbor, who had battled a terminal illness. She is resting outside on a wintry, nighttime landscape of rolling hills, and her body appears to be glowing, like snow reflecting moonlight. You can sense the woman’s essence melting into the earth, into the hills. In the distant background I thought I could see a ghostlike figure walking upright toward a brilliant star hanging low in the sky. The painting is titled Christmas Morning, and it comforted me for a long time after I returned home.