Susan Cox Is No Longer Here
This is something that happened during a long, dry summer, and if I don’t write it down now I fear it might haunt me forever. My hope is that the woman from the hospital room will eventually let go of my thoughts, so that I no longer see her peeling fingernails and the black bandanna tied around her head, her ruby slippers and that blue monkey with beads for eyes and a single black stitch for a smile. I can still hear the last thing she said to me, in her tired, smoker’s voice, and I wish to God I could forget it.
It all began in the middle of August, with a phone call from Wishard Memorial Hospital, the city hospital of Indianapolis, informing me that I needed to hurry to meet a woman who was dying. She didn’t have much time left. A few weeks before, I had inquired about visiting a patient in the hospital’s months-old No One Dies Alone program, NODA for short, essentially a bedside vigil to provide a loving environment for people who otherwise have no one else. I wanted to write a story about the NODA volunteers, what brought them to the bedside of a dying stranger, and also, what it was like for that person to die. The phone call could’ve been about anyone, but this particular woman was named Susan Cox.
I first saw her through a sliding door, a reflection on the glass. Frail arms folded on her stomach, two red socks pulled over her feet. She lay in a bed tilted up at a 45-degree angle, her back against a small mattress, some wires curling around her wrists, part of her legs covered by a blanket and a single cotton sheet. A Zenith TV above her bed was turned to Everybody Loves Raymond, on mute. I approached the metal railing of her bed and took her hand.
Susan had been diagnosed with Stage IV small-cell lung cancer, which had spread to her liver and into the bone of her skull. She had no family and only a few friends. I didn’t know anything else about her and had no idea what to expect, whether she would even be able to speak. Before I could enter her room, she needed to sign papers giving her consent, and I wondered if she would have enough strength to hold up the pen. But when I offered my hand, she squeezed.
“I know that I’m dying, and I’m at peace with it.”
“Hello,” she said. “By the way, this is Walter.”
She took her index finger, encased in a red pulse oximeter, and pointed to the plush monkey clutched close to her left breast, bought from the gift shop and given to her by a nurse. In the coming days I would learn that she clutched Walter while she was awake, while she was asleep, while chemo dripped palely from a bag into a port in her chest; that she talked to him, confided in him, asked him questions and then played up the funny silence to those of us in the room when he didn’t respond, while Walter just stared at her, smiling. At a certain point she refused to let go of him at all. That first day, she revealed that she wanted Walter cremated with her, mixed into her own ashes, and sprinkled into the Gulf of Mexico near Sanibel Island, Florida. “I’m 52, but I don’t care,” she said, laughing. “He gives me comfort.”
An oxygen machine chimed every 10 seconds, so there was never a true quiet in the room. The nurses in the hallway outside the door, sitting in front of computers, talked about their plans for the night.
“I know that I’m dying, and I’m at peace with it. I’m not afraid anymore,” Susan said. A NODA volunteer named Leslie McDonough sat in a chair beside Susan’s bed, reading to her.
Leslie asked Susan if she needed anything, if she’d like to be read a poem, if she would like the air turned down.
“What do you do?” Susan asked her. “I design stairs,” Leslie said. “As in, house stairs. I work for a company out of New England. Actually, I draw them by hand.”
“Everybody needs those!” Susan replied, sounding delighted.
Susan’s fingernails had been painted pink, which seemed to take her mind away from the brown hair falling out onto the shoulders of her gown. The bandanna tied around her head made her look like a pirate. She held up her withered hands under the fluorescent light above her bed and extended her fingers to show off her bright nails, as though even in this dull room, in this circumstance, a person could still enjoy the smallest of things. Her throat scratched out her voice, and she laughed, sang with the nurses, told stories, griped at the TV.
That voice would eventually ask me to do something I couldn’t, something that torments me more than anything I’ve ever heard.
† † †
She was a sweet woman. She apologized to the nurses for being a burden, and she apologized to the volunteers for being a bore. The nurses brought her applesauce she could hardly eat and small cartons of chocolate Ensure that she slowly drank. They fluffed her pillow and lowered her bed. They changed her saline solution, put a wet rag on her forehead, and calmed her when she complained of nausea and the pain. No one said a word about her condition, even when she brought it up. And sometimes she did. She was prone to say things out of the blue, like, “I’ve had an up-and-down life. There are a lot of things I regret, of course. I can’t take them back. I don’t consider cancer or that I’m dying a punishment. I consider it a fact of life.”
To the NODA volunteers, Susan became more than an obligation; she was a friend. Many of them looked forward to seeing her, to talking with her, driving to the hospital from their jobs or from their homes on the outskirts of the city, in the morning and in the afternoon and in the deepest part of night, when the hospital was empty of visitors and turned into a hard, cold place, the darkness of the room and the faint pulse of lights like some somnolent drug.
I sat in the room with the volunteers. Every three hours one of them would leave, and someone else would appear in the doorway. Amanda, Denise, Martha, and others. Noon, midnight, 2 a.m., 6 p.m., a rhythm.
They had found NODA in various ways. Amanda Egler read about it in a news app on her phone. Her grandmother had died the previous year, and it was fresh in Amanda’s mind that the death had been something of beauty, that her grandmother had been conscious until the very end, thankful that a constant flow of people were in her presence, sitting with her, the room never empty. Amanda read about NODA and considered what it might be like to die alone. “This is something very simple, but so important,” she said. “Because everyone is going to die, and to give three hours of your life, at the end of someone else’s, seems like the right thing to do.” She went to the first NODA volunteer meeting, just to listen.
During the orientation, volunteers heard a story and saw a series of pictures. The story was of an old man who had lived under a bridge, in the wind and the rain, and was dying. He had a dog. According to the presentation, the man was known as Cowboy. Cowboy had no friends or family, no one at all to be with him as he died. So the hospital found Cowboy’s dog and brought it to him. “There’s a human desire to not be alone,” said Amanda. “You have to have companionship, and the dog was his companion, and it was … God, it was striking.”
Susan was never alone now, never without someone in a chair pushed right up next to the railing of her bed. I was no longer a stranger, either; the nurses, volunteers, and I were a crew, telling stories, asking questions, in the room with a dying woman with bottles of Snapple and half-drunk cans of Diet Pepsi at our feet.
Susan told us about herself in snippets, in between long pauses: ice skating with her father in upstate New York, learning how to crochet from her aunt, baking a pie for the Pillsbury Bake-Off in the 1980s, working as a travel agent in some strip mall in Central Indiana. “I don’t know; I don’t remember; I’m not interesting,” she would say, and then tell us about the year she worked as a cashier at Arby’s or ran a Comfort Inn in Shelbyville. She told us her maiden name was Shakespeare. And that long ago she had a son with muscular dystrophy, who died of a disease called OTC, a condition that causes ammonia to accumulate in the blood; he lived to be 23. She made oblique references to having escaped an abusive marriage, and she still feared her husband might find her there in the hospital; one of her dying wishes was for no one to tell him where she was.
She had a happy childhood. Her parents, she said, were good to her. Her mother was her best friend. She died seven years ago from Alzheimer’s. Her name was Jeanne. Her father, Jim, lived in a nursing home and died alone. He had taken care of her mother. Had told Susan that he had married for sickness and health, for better or worse. Susan was married three times. “I’m not very proud of that,” she said. “It happened.”
Unlike nearly all of the other NODA patients before her, Susan was coherent, could carry on a conversation, made it a point to ask the volunteers why they would offer their time to a woman like her. She repeatedly told everyone “Thank you,” even when she could only whisper it. The nurses and volunteers wrote their names in black marker on a dry-erase board on the wall in front of her bed, so Susan wouldn’t have to ask each time they came into the room. She remembered me whenever I went back to see her, though I never wrote down my name. “I like him,” she told one of the NODA coordinators.
She was in and out of sleep. When she woke up, when her eyes adjusted to the light, she moved her hand to a plastic cup of melted ice water on the edge of her bedside tray, and with her fingers put the flexy straw into her mouth. She puckered her lips and wiped vitamin ointment on the cracks because the air in the room made everything dry. To doctors making their morning rounds, she talked about her chances of going home. That word was also written on the dry-erase board: “Goal: HOME.” But it was eventually wiped away, replaced with the word “DOG,” because a visit from a therapy dog was something she also really wanted and because her chances of going “HOME” were nonexistent.
She had endured one round of chemo before she was placed in NODA, and the doctors told her that another, in her condition, could hurt as much as it helped. But she insisted on having the second treatment anyway; she wanted to live. She asked for water a lot, was constantly thirsty, but the volunteers apologized and told her no. She could only have 1.5 liters of water a day because of something called SIADH, syndrome of inappropriate anti-diuretic hormone, which, according to one of her doctors, lowered sodium levels in her body; basically, if she drank too much water, it might flush out what little sodium she did have, and she could go into a coma. So she took salt pills. And drank Ensure.
A volunteer named Corrina Witcher came in and put her purse on the floor.
“Why are you here?” Susan asked.
Corrina began to answer, and then weep, and she replied, “My daughter died alone … I … wasn’t there for her.”
“Oh, my … I’m so sorry,” Susan said.
After a brief moment of silence, after she had wiped her nose, Corrina said, “I see you have Walter there!”
“How did you know?” Susan asked, looking at her monkey.
“I have my secrets,” Corrina said, her secret being that she had read it in an e-mail update for NODA volunteers.
A nurse opened the glass door to the room. “What’s your pain right now on a scale of 1 to 10, love?”
“It’s about a 5.”
“Good deal. You sound spunkier.”
“Is it time for my pain medication yet?”
Susan listened to Christian music on a CD player in the corner of the room, stared at the signatures on the get-well cards on the wall, readjusted the two-pronged oxygen hose in her nostrils, fidgeted in the bed, and scratched her arms with her peeling nails.
“Before I got sick, I was homeless,” she said. She had floated around Central Indiana, staying in the small town of Atlanta for a while and then living with someone out in the country, “someone bad.” After a failed marriage, she ended up this past May at the Wheeler Mission on East Michigan Street, a place for women at the end of their ropes.
At Wheeler, Susan’s life had just begun to turn around when a mysterious pain in her stomach and back eventually prevented her from taking part in many of the activities there, like watching movies and taking classes, making crafts, playing games. The pain spread and hurt her so bad at times this past summer, before she went to the hospital, that she would try to walk the stairs but couldn’t, would have to stand up from a table and excuse herself from playing Monopoly or Skip-Bo with her friend Ros, wasn’t able to curl up on the leather couch in the common area and lose herself in her favorite book. The women there often found Susan asleep sitting up, her face lit by the glow of the TV in the common area.
Before Wheeler, she drank vodka every day, sometimes as much as a fifth, and when I asked her how long she had been drinking, she got quiet, thought about it, and said, “Since I was a teenager.” She was accepted into a rehab program at Wheeler called Higher Ground, where she met case manager Bethany Nelson, who, over the course of the next few months, would become close to her, closer than anyone, like a member of her family. Susan chose Bethany as her healthcare advocate. She asked her to make all her medical decisions and to spread her ashes. Bethany, a small, tan woman who likes to run, visited Susan nearly every day after she went to the hospital. She spoke to the doctors on Susan’s behalf. Held her hand, stroked her head, talked to her as though she were talking to a child.
† † †
On the late shift, death was creaking doors and footsteps on shiny linoleum, the muffled thud of something falling off of a shelf down the corridor. It was the groans and whimpers of patients in other rooms carrying through the hallways of the ICU. It was the hand on the wall clock tick-, tick-, ticking, a chair back thumping against metal and breaking the silence in the room, the sunlight creeping deliberately across the floor and up to Susan’s blanket. It was the bubbling of a ventilator, the phlegm in her throat choking her snore while she slept, the warning sound of something beeping that hadn’t before, a light that started to flicker, a twinge of cold in the room. We didn’t know what death would sound like, or when it would come. We just knew that it would.
Susan’s vigil passed two days, three days, five days, and stretched into an eighth day, the longest of anyone in the program. She praised God and then denounced him, gave her soul to Jesus Christ on the first day of the vigil and then took it back a few days later, called him out as she felt less sure about dying and a lot more scared. “I don’t want to die!” she said.
Volunteers recycled their shifts and met her twice, a third time, began to feel even more attached. They read her Shel Silverstein and verses from the Bible. They patted her forehead and covered her legs with a blanket, and then took the blanket off when she got hot, exposing her thin legs and a pair of fuzzy red hospital socks that everyone called her ruby slippers. Handing her tissues, standing over the bed and checking out what appeared to be new sores on her skin, calling for a nurse, sitting there, staring hopelessly—actions that occupied the hours. One volunteer told stories to Susan about playing a wooden string instrument called the bowed psaltery. “It’s an unusual but privileged journey to be with someone at the end of their life,” the woman said. “Why is the process of life so difficult? It’s a struggle for us to get in and out.”
When not at the hospital, the volunteers who had jobs said they tested the water content in local rivers or drove cars off the lot at auction. Some were former nurses and office administrators, and one woman worked for McDonald’s corporate. A volunteer named Martha Henn, who was the same age as Susan, said she was there because she had a life bizarrely untouched by death, and she wanted to see what it was like. She had lost relatives, but they’d all been old. She’d never had a friend pass away, never knew anyone who got hit riding a bike or had a heart attack or was killed in a car crash. She knew one other person who died of cancer. “I just thought there was something unnatural about how insulated I had been from death,” Martha said. “This not only gives me the opportunity to do something as a volunteer, to have a connection, an impact, with actual people—but it has the potential to teach me a great deal about death.”
During their vigils, the volunteers recounted stories from the hours they’d spent in other hospital rooms with other NODA patients before Susan. The big man who barely made a sound, who slept a lot, who had sung in a barbershop quartet before he got sick. Volunteers played a CD of his own singing for him as he died. One night he sat up in bed and yelled, “Please, help me!” and grabbed the volunteer’s arm. And the young woman, only 24, who had untreated lupus that had spread to her organs, which were shutting down. She could not talk, but she responded to gestures, to touch, to noise; when volunteers read to her, she became calm, her body relaxed. And the old blind man who tried to speak garbled words, who had a diabetic girlfriend in a wheelchair. He wanted so desperately to be understood. A volunteer took the hand of his partner, who also couldn’t see, and placed it on his.
The volunteers put themselves in these situations of forced intimacy, with people whose lives and circumstances were different from their own. But in the end the experience was elemental. It was human.
One early morning, a volunteer named Sara Bixler took a seat and caressed Susan’s hand, and Susan opened her eyes. “Oh, I was hoping it’d be you!” Susan squeaked.
Sara, like several of the volunteers, had no job and plenty of time on her hands. She read about NODA in The Indianapolis Star and was compelled to act because it was just in her nature to help; she volunteered at the Humane Society and also at her granddaughters’ school. She could take any shift, could be in the room whenever needed, like at midnight. She walked down the hall and into the room using a cane, though she was only in her early 60s.
“I think she’s a very brave woman,” Sara said. “Like every single one of us, she’s afraid of dying.” She knew Susan well because she’d seen her four times, including two 9 p.m.-to-midnight shifts and one 6-to-9 a.m. When she read about the program, she thought, “Oh my God, I have to do that. Just the thought of people dying alone … it is the scariest thing I can imagine.”
Sara brought Susan some daisies and baby’s breath from the gift shop. A card that said, “Susan, God loves you, and I love you, too—Love, Sara Bixler.”
The two were not so different. Sara had also gone through a bout of cancer, 19 years ago. She, too, had been in a bad marriage. To Sara, the more time she spent with Susan, the two became like half sisters.
Over time, Susan grew a little quieter, a little whiter, moaning about her pain medication, her eyes fluttering open and closed. Walter stayed in her arms, pressed so closely against her, now with some type of dark stain on one of his white paws, his stuffed monkey arms limp on her arms. His small black nose pointed directly at her. Any time she shifted positions in bed, she would rearrange him; he was constantly by her side. We asked her questions about Walter: if he, too, was feeling okay, if he was having a good day, what he had said to her; we told her to hush when she made fun of herself for talking to him. He wasn’t just some stuffed animal from the gift shop; he was now a totem.
She was dying in a room with a turquoise trash bag and a window that looked out onto a brick wall. The paint on her nails began to fade. Her hair did not grow back. The nurses gave her a bath. The room smelled like medicine. The doctors came in packs and scribbled things on paper. It was only hours now. It had to be. Her breathing slowed. Sara touched her forehead. “Thank you for being here,” Susan moaned.
“Sweetie, you are so welcome,” Sara said.
“I wish I could go home.”
† † †
The hospital was old, stained in places and peeling in others, would in fact be gone in less than a year, torn down for the new, glass-covered Sidney & Lois Eskenazi Hospital, the old instruments replaced, the nurses and doctors moving down the street. Susan’s death coincided with the death of the very walls around her. The idea of dying could be agonizing, but the hospital staff and NODA volunteers humanized it, made it warm and normal and funny, and it was easy to be struck by the beauty of what we were seeing around Susan in the face of the greatest unknown.
On the morning of August 19, Susan got worse, a lot worse. She took a breath maybe once every 20 seconds. Walter was on the verge of falling out from beneath her arm. The room was dark, the blinds drawn.
Karen Estle, the spiritual advisor of Wishard’s palliative-care program and the matriarch of NODA, walked slowly into the room. She had known Susan since she’d been diagnosed with a terminal illness, visited her every day, prayed with her and listened to her. Karen had seen so many patients dying alone in her years as a hospital and palliative-care worker—30 to 40 patients a year at Wishard—spent so much time in the rooms of the dying, that she became a real-life angel of death, knowing exactly what to say, exactly what to pray, what to utter at the very, very end, and that no single death was ever the same as another. She wore a white shawl and a nametag that dropped from her neck. She had a tendency to whisper, even when she was trying to make a point, which made everything she said sound so peaceful, even directions on how to get to the bathroom down the hall. As a child, Karen had been surrounded by death, survived it more than once; her back bowed from a horrible case of polio, and she spent years of her childhood in an iron lung. All she did was talk about death. “We as a society don’t talk about it enough,” she sighed.
That morning, Karen could tell that Susan was going to die.
“It won’t be long now,” Karen whispered, stroking Susan’s arm. Susan lay back with her mouth open, her eyes closed. “The pain will go away,” Karen went on, her head almost touching Susan’s chest. “The fear will go away.”
Bethany, Susan’s healthcare advocate from Wheeler, had been in the room for an hour, sitting at the foot of the bed. A young doctor came in at 7:40 a.m. wearing a white coat and black shoes.
“Has she been responsive at all?” he asked.
He touched her shoulder, moved a stethoscope across her chest. He felt her feet. Her hands.
“Ms. Cox?” Nothing.
“We’ll work on making her comfortable,” he said. Then he was gone. Susan began to moan. The room felt colder than it ever had.
“I know her so well at this point,” Bethany said, voice quivering. “She has just struggled so much. I know she doesn’t want to take any more medicine. I want to make decisions for her as if she’s my own mother.”
Bethany took a blanket off Susan’s legs, stepped out of the chair, and climbed into the bed. Curled right up with her, tucked her knees into her chest, sandals dangling off the edge of the mattress.
Karen talked to the nurse about turning off the beeping sound coming from Susan’s oxygen machine. Then Karen raised her head and spoke, looking at no one. “We just choose to be present,” she said. “I’ve seen people taking four breaths a minute, hanging on, waiting for loved ones to come. The body has an amazing will to live. But we’re here. We’re here.”
Karen looked at the dying woman. “You don’t have to worry anymore, Susan. Don’t be afraid, it’s time to go.
“These are her last minutes,” Karen said. “It won’t be long now.”
The blinds were drawn. A feeling of certainty fell peacefully over the room, and with it, relief. Karen leaned over the bed, over Bethany and Susan, and began to pray. All three of them so close together, waiting.
† † †
Had she died then and there, it would’ve been easier. It would have been proper. It would have been decent, with Bethany holding onto her, saying a final goodbye; with Karen, the angel of NODA, in her white shawl whispering prayer; with Walter buried firmly under her arm. They would have given her a service, and the volunteers would’ve attended, and eventually her ashes would’ve drifted off in the Florida wind. And the rest of this story wouldn’t have had to be written.
No one wanted her to go, of course. But we wanted her to have an easy death, a good death. A death in that room with the cards on the wall and the daisies and baby’s breath on the windowsill and the nurses who had cared for her, standing just outside the doorway—it would’ve been perfect.
But Susan awoke later that morning and opened her eyes as wide as they would go. She began asking for milkshakes, hamburgers, Shapiro’s deli sandwiches, this woman who hadn’t eaten anything but a few bites of applesauce and Jell-O in weeks, taking nearly all of her nourishment from liquids. She sat up in bed and started breathing more normally, the port sticking out of her chest like a teat, rising and falling with each breath. She was moved to a quieter room around the corner, and she asked for the TV to be turned to a channel showing a rerun of Friends.
We were witnessing nothing short of a miracle. Susan had been reborn. She was alive! That second round of chemo, the one she was advised against, somehow saved her life.
We were happy at first, we really were. Almost nine days after she was given just a few hours to live, she began talking again. Her voice changed, and she spoke in a higher pitch, like her spirits were lighter. She was curious about the cards and messages from her friends at Wheeler, and the flowers. She asked repeatedly and incessantly for pain medication. She had another stuffed animal, a bear named Benjamin, at her feet. “Benjamin doesn’t like to be near Walter,” she said.
“I’d like to call my friend,” she added. “She’s probably wondering why I haven’t called. I don’t even know where my cell phone is.”
We were incredulous to learn Susan had gotten up with the help of a nurse. She walked around, used the bathroom, and sat in a chair by the window, the first piece of furniture other than a bed she’d been in since what seemed like forever. “I have so many people I want to see before I die,” she said.
Something else very strange happened. I’m not exactly sure when it began. That night, maybe. In the room with the pulsing lights and machines chiming, as a volunteer named Mandy Long and I sat with her. Susan wore a fuzzy blond hairpiece that she called her Phyllis Diller wig. She started, slowly, to act like a different person. A Susan that none of the volunteers or I had known. This was not the Susan who was apologetic and thankful. This was a Susan who wanted pain medicine, pain medicine, pain medicine, kept asking for it again and again. She had always seemed so innocent, always so sweet, but we didn’t really know her, something we had never said honestly to ourselves.
She claimed to not remember who sent the flowers, her friend Sara, the volunteer she had earlier been so relieved to see.
“Do I have NODA?” Susan asked Mandy. “Is that you?”
“Yes,” Mandy replied. “And all the other people, you know, there was a lady here before I came.”
“Who’s next? How long are you here?”
“Oh … good.”
“Are those daisies? Who are they from?”
“The card says, ‘Sara Bixler.’”
“Hmm. I … don’t remember her. Well, vaguely, I guess. What does she look like?”
Susan was moved out of that room the next day. The doctors didn’t know how long she might live. She went to a room on the fourth floor, to be monitored, before Medicaid could send her to a nursing home. Her NODA vigil had come to an end. Barring some drastic turn in her health, she wasn’t going to die there anymore, the only patient in the program’s brief history to not succumb in the hospital.
That’s when Susan basically stopped talking at all.
I went to see her a few days after the recovery. The wall was empty, with none of her cards with the crosses and messages, or flowers. I saw Walter in a chair. I wanted to pick him up and give him back to her.
“Susan, do you remember me?”
She turned her head, the cheeks sunken and the eyes wide as they could go. They looked orange. Her pursed mouth glistened with antibiotic ointment.
She stared at me. I said my name and asked again. I waved, like she was a baby, and then felt dumb for doing so. Her arms were at her sides. I stood there awkwardly, couldn’t conjure any more words; she just looked through me and said nothing, and I eventually left.
Karen was outside. “Her cancer is not cured,” she explained. “When she first started coming around the other day, she was angry about that. She said, ‘I asked God for a miracle, because I don’t want to die.’”
Susan’s doctors informed her that she still had cancer, and that she was still going to die, but she did have a little more time. “For some patients and some circumstances, you don’t want to keep them alive to suffer more,” Karen said. “I’m telling her that she got a miracle, but not the miracle she thought she needed. Maybe she won’t be as scared. Everyone in the room thought she was dying. One of the volunteers sent me an e-mail after we stopped Susan’s vigil, saying we did the right thing, and when she needs us again, we’ll be there.”
† † †
Her eyes were on fire. Susan stared at visitors who came to the room on the fourth floor, the one with no get-well cards and no flowers. Even though the vigil was over, and the volunteers absolved of their duties, some of the women saw her anyway, went to spend time with her, to show her that they still cared. To hug her, which she had loved. To hold her hand. To try to talk to her.
“She didn’t know me,” said Cathy Jefferson, a volunteer. “I had met her four times; I felt so close to her. When I walked in that room, she said nothing, and the previous times she would call me by name. I talked to her and tried to bring up some of the things we had talked about the previous times, but she just had these wide eyes, looking at me.”
“She was angry,” said another. “Really, it was very hard. Very dark. My whole experience with her was dark. I tried to reminisce with her, and she just had this stern glare. Her eyes followed me around the room.”
“She wanted to be liked,” said one volunteer who was a former nurse. “She had a hard life, had probably never been loved as much as she had when these people were sitting around her. She couldn’t believe people would do this for her, for no reason.”
When Susan began to talk again, it was to reiterate that she had no idea who anyone was. She didn’t remember Karen or the doctors. She didn’t remember why she was in the hospital. She didn’t remember Walter. “Why am I here?” she would repeat. “Am I dying?” She said it almost jokingly.
Someone asked her if she remembered Bethany, of all the people in the world, and she deadpanned, “Who?” She seemed even smaller, even more shriveled, even more diminished in the face of her survival, a bald-headed stranger wearing that fuzzy blond wig and a pair of ruby slippers.
Susan was relocated to a nursing home downtown, a dank place with a wet mattress and a cold floor, where the staff was stretched and she had no one to talk to. Bethany was not happy with her care, so Susan came back to the hospital, where she kept repeating: Am I in the hospital? Am I in the hospital? Am I going to die? Am I going to die?
NODA called a meeting to brief the volunteers on the second floor of Wishard, attended by Karen and a couple of Susan’s doctors. Susan’s condition was to be addressed and explained, if there even was an explanation. Did she have something called “chemo brain,” or was it a psychiatric manifestation of the bad things that had previously happened to her, or a combination thereof? Was she making up the amnesia? It was a mystery. And we all wanted to know what was happening, why she had forgotten, why she had been frowning and acting mean, why she didn’t die, why Susan was gone, and why some other woman seemed to have taken over her soul.
“There was an element of innocence about her,” said the doctor, “[though] we knew she was not innocent.”
“She has been consistent in asking us, ‘What’s Wheeler? Who’s Bethany? Am I in the hospital?’” Dr. Rafael Rosario, one of Susan’s physicians at Wishard, told the full room. “I think many in the hospital who knew her were happy she didn’t die, but just uncertain. She is going from support and an adopted family to sort of the regular hospital floor, and then nursing-facility care that does not have the same degree of attention. She cherished the attention here.”
The doctors informed us she was doing better. But they were increasingly puzzled, because nothing medically pointed to her strange behavior. Her MRI still showed cancer, including in her skull, but some improvement in her overall picture. There was no cancer in her actual brain, which ruled out one possible explanation for her strange behavior. She was stable, but confused. She no longer clung to Walter, which the doctors noted to us as though it saddened them. They told us what we already knew, that Susan was just a very different person than the one we all remembered.
It was almost impossible to imagine that she had changed on purpose, that she wasn’t talking in order to make some kind of point; that she was really someone we didn’t know and never would, that all her behavior, before and after her turnaround, was the behavior of a lifelong addict, to get attention, staring through us, doing anything she could to get what she wanted. Pretending.
She was moved from the hospital, again, to the Abbie Hunt Bryce Home for the dying poor, where she began to roam into other people’s rooms.
“Susan had a connection with people here,” said Dr. Greg Gramelspacher, director of palliative care at Wishard. “There was an element of innocence about her, despite that we knew she was not innocent.”
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Bethany was as tired as she could ever remember. She has an office on the eighth floor of Wheeler Mission, a 10-story brick building about a mile from the center of downtown. Wheeler is a place where women can come in off the street and, if they aren’t drunk, find a decent meal and a place to sleep, or even more permanent shelter, if they are ready to make a commitment. The wall behind Bethany’s desk is covered in ribbons and certificates, prizes for finishing marathons and ultramarathons around the country. This strange journey with NODA that still had no discernible end had been almost impossible for Bethany to endure.
To clear her mind she ran, which was her favorite thing to do. That’s how she released her feelings about her overwhelming responsibility, if only for a little while. She’d been running a lot in the past few weeks. And coming home later, more worried.
“If you and I had just found out we had a terminal illness, we would surround ourselves with family and friends,” Bethany said. “Well, when she discovered it, she was here, trying to beat an addiction, fleeing an abusive situation, and by the time I saw her she was in poor physical shape from the last time her ex-husband had his hands on her. You now find out you have a terminal illness that you will die from? If how she dealt with it is that she just forgot everything, I can’t blame her.”
Susan had lived on the seventh floor of Wheeler, in a bottom bunk against a concrete wall. She didn’t come in with any possessions, and the only thing she left behind was a candle holder she made. Susan spent her time in the library. She had been clean for two months and had stopped smoking two packs of Winstons a day. She watched TV in the communal room on Friday and Saturday nights, kids’ movies like The Aristocats and Space Jam. She and her best friend, Ros, who had also been an alcoholic, would walk to the Central Canal downtown, where they sat looking at the water and the birds above. They were almost the same age. They did, according to Ros, “old-person things.” They played Dogopoly and painted wooden picture frames and watched the evening news. It was a simple life with a hard structure, but that was pretty much all Susan needed.
Susan left a few stories behind, like when a ball of yarn rolled across the carpet in the game room and, instead of stepping over the string, she picked it up and walked beneath. She said she got her GED during a six-month stint in the Hamilton County Jail for theft and public intoxication, and her worst subject was math. She liked bicycles. And loved dogs. Once, after a long meal downstairs, Susan had said, “Yeah—a cigarette would be nice right now. But I know we can’t have one.” She liked cheesecake, and when she got sick asked Bethany to eat a piece for her on her birthday every year after she was gone.
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It was impossible to forget her, because it meant suppressing a memory of kindness, an act of good, all that love in the hospital room, which felt real. So when Susan moved to ManorCare, a nursing home on the south side, it was difficult for the volunteers to reckon with the fact that NODA at first encouraged them to see Susan there, and then, after she started acting strangely, advised the volunteers to leave her alone. But one of them, Sara Bixler, thought about Susan a lot, the woman she had spent hours with during four NODA shifts, the woman she’d brought flowers to in the morning and held hands with after midnight, the woman she believed would’ve been her good friend, had she not been sick. But Sara, like all of us, had expected Susan to be dead by now, and maybe only a beautiful memory. Perhaps it would’ve been better had Sara stayed more distant with Susan at the hospital. “But you can’t be a zombie when you do this,” she said. “You have to be emotional. If you’re not, it defeats the purpose of the program.”
Sara visited Susan in the nursing home twice. After that, all she knew about her friend was information shared at that last NODA meeting, and updates over e-mail.
“I’m not saying this is her, but an addict would lie to God himself to get what they want,” Sara said. “My son is an addict. Everything is about them and their need. They’ll do anything to get it satisfied. They like attention. They like it a lot.”
Susan received Sara’s attention and her affection, which had been sincere. And if she was now faking, that was something Sara didn’t want to know, because of how much it would hurt. Sara sat with her cane propped against a chair in the Wishard cafeteria, turning the plastic cap on a Sprite bottle. “This is just so very real,” she said. “The fear of dying alone is very, very real. When she found out that she was leaving the hospital, I think a big part of her thought, ‘I’m not going to get what I want; I’ll fix that.’ I hope I’m wrong.”
† † †
Outside the door, I heard the old people scooting down the hallways, wheelchairs squeaking like some twisted song, their heads lolled toward the ceiling, nothing to do but wait.
Susan’s name was written in big black letters taped up by the door to let people know who she was. I drove 30 minutes south to see her, three times. I walked in past the front desk, telling no one why I was there. Framed paintings of flowers hung on the walls of the hallway, near every one of the doors.
She lay in a smaller bed, closer to the floor. A blanket was pulled up to her chest, her hands on top of the blanket, pink faded fingernails. She was wearing a black bandanna tied around her head.
There was one chair next to her bed, and I sat down. She was sleeping, her face covered by an oxygen mask that puffed vapor. This place, ManorCare, was where she was going to die. A curtain hung from the ceiling, the kind that divides two patients in one room.
She opened her eyes and looked at me.
“You’re that writer,” she said.
I took her hand and thanked her for remembering. Did she recall our time at Wishard? She nodded her head. Yes. “I don’t want to be here,” she said. “I’m scared.”
The old woman who shared Susan’s room had hair like Albert Einstein and incessantly scratched her forehead as though puzzled. She looked at us from across the room.
Susan wore a necklace that Bethany had given her. Walter was in a wheelchair at the far edge of the bed. A new stuffed animal, a pillow with moose ears, was lodged between her arms. Wilbur. “I like him better because he’s softer,” she said.
She had not been out of bed in a long time. She had not been outside. She had not been up. She hadn’t seen anyone, except Bethany.
“I need them to up the pain medication,” she murmured. She looked at me, and then closed her eyes, and then looked at me again. She lifted her head from the pillow and squinted. I sat there for a while and she fell asleep, then she woke up again.
A posterboard on the wall read HAPPY BIRTHDAY, written in cupcakes and balloons. A card from Wheeler was taped up beneath that.
A doctor came in. “How are you feeling? Are you feeling any pain? I’m just going to listen. I’m going to cover you a bit, okay?”
The old woman’s eyes across the room were like crystals. I walked over to talk to her. She said her name was Kathleen. She was born in 1910. She had no children. No one had come to visit her in more than a week; no one she knew had been there in two. The last person she saw was “the woman who comes to give us cookies,” she said.
“I love her,” Kathleen said, pointing across the room at Susan. “She’s so quiet! Say … Is she goin’? There’s nobody with her now, if she is. I don’t even know she’s over there. She’s like a mouse.”
“Susan!” she yelled. The only sound was a stale, bubbling hum from the oxygen machine.
What I didn’t realize was that this was to be my last visit with Susan. Because the next time I would show up at the nursing home, I’d be escorted out by the manager, angry after the staff found out I hadn’t been signing in properly. They would call Bethany and tell her I had been making Susan upset.
I had no idea this would be my last chance to say goodbye. That she would be dead in two weeks. So I didn’t. As I stepped out of the room, she stared at me, but she wasn’t angry. I was one of only two people she had left.
“I’m so scared,” she whispered.
Then she touched my hand again, as she had the first time we met. And she made a request, the only thing she had ever asked me to do.
“Please, don’t leave.”
Illustration by Jacob Thomas; photo of NODA volunteers by Tony Valainis
This article appeared in the December 2013 issue.