Finding a Place of Peace : The Carl Bean AIDS Care Center Specializes in Comfort--for the Dying and for the Volunteers of Project Nightlight Who Sustain Their Spirits

Between breaths, the stillness in his chest seems to linger with finality. Eugene Lever’s only sounds are occasional moans from pain the morphine cannot still. Like an aged, deciduous tree, Lever’s body has lost its fullness. His arms and legs have become bare sticks, and details of his life have been swept from memory like fallen leaves.

AIDS has ravaged Lever to the winter of his life. If he is battling to live, it is a silent battle, waged in stillness from within.

Working in shifts at the Carl Bean AIDS Care Center, volunteers of Project Nightlight sit at his side and hold his hand. Some play soft music and meditate or silently pray that he find peace in life or in death.

They know nothing about Lever’s past, and of his present they are aware only that he is alone and dying. Some see the photograph above his bed of a young boy smiling and wonder who he is. The words “I love you” are scribbled across the bottom.

They lean close to him and speak words of love, searching for acknowledgment--a slow blink of the eyes, a squeeze of the hand--when Lever is too weak to speak.

Tenuous swells of strength allow him to slowly claw his way up a peak--not high, not wide--but to a point of survival. Three days later, his appetite returns. He asks for food and a cigarette.

Cassandra Christenson, founder of Project Nightlight, loads him into a wheelchair and whisks him outside, where his gaunt body can be touched by sunlight and his feet can touch the grass.

Lever no longer is considered to be “actively dying,” a condition that almost all residents at Carl Bean, located in the West Adams area, soon will confront. The hospice’s 25 beds are occupied by those who doctors have determined have less than six months to live. Few battle back, regain enough strength to leave for another life chapter, another fight against a vicious disease.

Christenson leans across the side rails of the chair and looks directly into the pallor of Lever’s face, his eyes sunk deep into sockets. They are meeting for the first time, and Christenson doesn’t know precisely what to say.

With each person, she must find a way to convey the message that she comes to them with love, that life even now--especially now--is precious. Sometimes she speaks with words, sometimes with touch or meditation.

She begins to sing:

“You are my sunshine, my only sunshine,” then fusses with pillows and blankets, wraps her arms around him and places her cheek against his, feeling his sweaty skin drawn tightly over protruding cheekbones.

“Can I ask you a question?” Christenson asks Lever.

“Yeah,” he replies.

“It’s really an important question. Did you know you were about ready to die the other day?”

“No.”

“You were about ready to die.”

“Why?”

“I don’t know, and now you’re back. . . . You were really close to dying. . . . Did you see the light, ever?”

“What light?”

“Sometimes when people get close to dying, they see an incredible light.”

Lever doesn’t answer. His mind drifts.

“Can I go home?” he asks.

*

Since 1981, Cassandra Christenson has specialized in comforting the dying, and in 1991 she founded Nightlight so that people would not die alone. With 120 active volunteers and $60 in the bank, Nightlight reaches out to private homes, hospitals and hospices to sit at bedsides or even climb into bed with people near death.

Nightlight volunteers have different beliefs, different faiths but are trained not to impose them on the people they serve. Their training does not include a step-by-step process of what to do. They are told to approach each encounter as empty vessels, not with their own agendas, not to proselytize or exercise their own belief systems but to honor the clients’.

“In general,” Christenson says, “we cannot be effective unless we totally honor the people we serve, where they’re at, and only respond to life up to the moment of death and never address what goes on afterward. . . . It’s all about honoring life, that person’s life, not ours.”

Once while Christenson was working as a private nurse, she had a patient who didn’t believe in God or an afterlife. The man had a love for jazz, and when he awakened from a coma, he described how he had heard wonderful music and was drawn to a group of musicians jamming and whooping it up.

They were talking about a party they were going to, and the man asked if he could go with them. One of the musicians turned to him and said no, he could not, that he must turn back. The man looked into the musician’s face and it was Louis Armstrong.

The next thing he knew he was in a hospital room.

It might be jazz, it might be Jesus.

“The bottom line,” Christenson says, “is that I don’t know what happens when we die.”

Many of the volunteers, known as Nightlights, hear about the program through Marianne Williamson’s Course on Miracles. Many have lost loved ones to AIDS, but the one thing that binds them, Christenson says, is that, “We all come from a place of love.”

Nightlight has not been welcomed in all quarters. “I remember a doctor . . . a very, very good surgeon in Beverly Hills, and he said, ‘If you ever talk to one of my patients about death, I will throw you out,’ ” Christenson says.

The program originated as part of the L.A. Center for Living, but a change in management resulted in its elimination. “They were afraid that with people going out in the middle of the night, they would be responsible, and they were afraid that we used the words ‘helping people through their dying.’ They thought many people would think we were trying to kill people.”

Christenson has continued the program, funded through donations and T-shirt sales, as a nonprofit organization since 1993. (It is not related to a similar program, also called Nightlight, that operates on the East Coast.)

*

Actor Leslie Jordan has been a volunteer with the program since its inception. As he enters Lever’s room and sits by the bed, Lever looks at him and in a startling clear voice says, “We’re getting too old, too fast.”

Jordan smiles. His presence lights up a solemn room, and his work with Project Nightlight keeps him centered, he says, mindful of what’s important in life.

“I walked into a room once and a kid, 24 years old, was lying there in a diaper. He’d just lost his sight, and I had become good friends with him. I was saying how I had had this terrible day, my acting audition didn’t go well, and I was depressed. He looked at me and said, ‘You’ve got problems? Your acting audition didn’t go well? I’m lying here in a diaper. I’m damn near dead, I’m blind.’ I just went, ‘I’m sorry.’ ”

Volunteers say they receive more than they give, and in this case, it is Lever who gives Jordan a smile. The funny, 4-foot, 11-inch man with the Tennessee twang who made people laugh on “Murphy Brown” (as Kyle the secretary) and later in the television series “Hearts Afire,” sits quietly at Lever’s side.

Laughter has been a defense mechanism throughout Jordan’s life. He can laugh about standing in the unemployment line recently signing autographs. When things get tough, he searches for humor to ward off pain. He makes the bullies laugh.

It doesn’t always work, of course, and it won’t work now with Lever, who has been at Carl Bean since Aug. 28. Jordan has learned, however, that the ability to make people laugh is not his only gift, that he also is capable of sharing people’s pain. Being a volunteer has brought meaning to his life that acting could not. And the pay is about the same.

Lever’s recovery is tapering, and the peak he has climbed may not be high enough. It has been a week since he came so close to death, since he may have seen the brilliant white light or God. Or Louis Armstrong.

*

As darkness arrives, Fran Sutton-Williams sits in the expansive Carl Bean atrium, leaning forward in her chair and describing her life’s journey, the difficult, unexpected twists and turns that have led her to the bedsides of the dying. “There has been a lot of death in my life,” she says calmly, “and here I have found peace for the first time.”

Sutton-Williams, a writer and acting coach, says that in assessing her journey and by helping those who are dying, she has found perspective on her life. “I got an understanding of the notion that love heals everything, love can do anything. . . . To a great extent, Nightlight has been the best thing that ever happened to me.”

The hospice is operated by the AIDS Healthcare Foundation. Its modern atrium extends to the concrete ceiling above the second floor. It is open and airy, and in the daytime sunlight flows in. It feels like neither a hospital nor a convalescent facility.

Sounds mix and swirl. There is almost always music from the stereo, television voices in English and Spanish spilling out of the rooms.

William Wolf is banging out a tune on the piano. Wolf was homeless, eating from Dumpsters before he became ill. When he arrived at Carl Bean, he was near death. Being here has taught him an important lesson about life. “I never knew people could be so kind,” he says.

Terry Goggins sits on a couch listening to the music. Goggins is one of the few who will be leaving the hospice alive. He has been here two years, and arrangements are being made to fly him to Baltimore, where he can visit the graves of his mother and father, as well as that of a younger sister who succumbed to AIDS.

For 12 years, Goggins’ family didn’t know where he was. Finally, earlier this year, they received a call from the hospice.

“I just thanked God he was still alive,” says his sister Joyce Goggins. “We want him back. We want him here, where he can be close to his family.”

Like Wolf, Goggins was homeless before coming here. This has become his home, and he is both nervous and excited about leaving. He has only one complaint about the hospice: “It’s sickening,” he says in his slow, quiet voice, “to see so many people die.”

He is confident that the disease that has claimed so many will not claim him. “I just want to start life over,” he says.

As Daisy, the house cocker spaniel, trots about the atrium on the heels of nurses, she adds to the mix of sounds with the tinkle of her metal dog tags. A large aquarium gurgles softly.

And as Sutton-Williams describes how her volunteer work with Project Nightlight has changed her life, there is another sound: the wheels of a gurney chattering against the tile floor as a body is wheeled out in a blue bag. No one seems to notice.

“All the volunteers I’ve met have a particular spiritual bent,” she says. “It’s as if this is a major life lesson for all of us and that dealing with people who are dying is like an accelerated lesson. You have to go against a lot of cultural conditioning. You have to go against a lot of your own fears, you have to do things that most people aren’t willing to do to be here.”

The hospice is a confluence of many paths. It is a place of love and rage, laughter and tears. By its nature, people come and go. Names and faces change and what remains constant is that it is a place where the living meet both life and death.

*

Al Everett, 67, is tall and slender. Alma Allen, 49, is tiny and blind. Al is the eyes, Alma is the mouth, they like to say. Working as a Nightlight team, on Mondays and Fridays, arm-in-arm, Al and Alma stroll through the hallways and visit residents.

“Is this Joe?” Alma asks as they enter a room. “Hi, Sweety Pie, how ya doing?”

“I’m getting better every day,” says Joseph Rothschild.

“That’s the spirit,” Alma tells him. She extends her left hand, and Rothschild takes it. “You got to have a good attitude and good friends,” he says.

Alma asks Al if Rothschild has water, needs ice. Al scurries around the room obediently. “I’m a mother hen,” Alma says, “I worry about my babies.”

Alma has become particularly close to Rothschild. That happens with some of the residents, she says. She loves them all, but sometimes she really clicks with people. She knows she will cry the day she walks into Rothschild’s room and he is gone; just as she has done with others, like Eddie, who she always greeted with “Eddie my love.”

“Sometimes I wish I could steel myself against knowing that he’s going to die, but I can’t do that,” she says. “I can’t stop myself from getting close to them.”

On the second floor, they stop by the room of a man who keeps with him a tape recorder. His sister has asked him to record his voice, so that she can still hear him when he is gone. The man’s feet are sore, so Al sits on the bed and massages them while Alma sits quietly by the bed.

What brought Al, a family counselor, to the program was his own fear of death and a scare that he may have been HIV positive. “I just thought I had AIDS,” he says, “and I felt that I hadn’t accomplished much. I asked myself what I wanted to do with my life, and that’s when I became a volunteer.”

Alma lost her eyesight in 1990 and has been a Nightlight for two years. Al has been with the program for three years.

“The more I give of myself, the happier I am,” Alma says. “Sometimes when we’re into our own selves, we run around looking for happiness, running around and around and around going, ‘Where’s happiness, where’s happiness?’ Now I can truly say I am a happy person. When I come here and talk to the people, they don’t have time to dwell on what they’re going through, being close to death. . . . We talk about what we did as kids, we sing songs. The other day we were singing nursery rhymes.”

They stop by the room of another man and sit down to listen to him recite his poetry about the streets, about gangs, about a woman he loves named Betty.

In addition to their two weekly visits, they come individually as needed when someone is near death. Both have sat with Lever.

“When Eugene screams, my stomach just tightens up,” Alma says. “I wish I could take the pain for him.”

*

At 6:30 p.m. on Sept. 26, a nurse’s assistant enters Lever’s room with red gelatin and cranberry juice. He is too weak to draw from a straw or even swallow and has developed a weak, breathless cough.

The assistant reaches down to touch Lever’s right hand, which is cold and blue. She shakes her head and leaves the room to consult with Jenny Cobb, a registered nurse. Cobb examines Lever and orders oxygen to help him breathe. Often, when the green tanks are rolled into the rooms, it is an indication that the body is shutting down, that the end is near.

“With Eugene,” Cobb says, “it’s hard to tell.”

Cobb has worked with AIDS patients for 15 years. “I’ve never hated a disease like I hate this one,” she says. “I got in this business because I was going to cure everything, save everybody, and then I started working with AIDS, and all the sudden, I was never winning. I never, ever won. I wasn’t curing people. I wasn’t saving people.”

Eight years ago, she learned to apply a different standard to her work, a different way of distinguishing between winning and losing. To bring comfort to people nearing death, she discovered, was victory.

“It’s a small thing, going in there and ordering oxygen for Eugene, but do you know what it’s like to need oxygen? It’s going to make him feel better, and right now, that’s what’s important.”

Like many of those who work closely with AIDS patients, Cobb sees her own life differently now. “I never see a bad sunrise,” she says. “I never have a bad cup of coffee.”

Within an hour, warmth and color return to Lever’s hands and feet. At 8:15 p.m. Nightlight Reuben Beckham enters the room, extends his left hand above Lever’s head, almost touching him, and places his right hand on top of Lever’s.

They first met weeks earlier, during Lever’s initial brush with death. When Lever saw him, he reached up to touch Beckham’s silver hair, as if he were drawn to it by a memory.

Beckham, 56, has had two near-death experiences, one when he was a youth and attempted suicide, the second more recently when he suffered a heart attack. On both occasions, he says, he saw a brilliant, warm, white light.

“Hello, Eugene, it’s Reuben,” he says. “Just relax, just relax.”

The night before, Beckham says, after leaving the hospice and returning to his apartment, he had trouble sleeping. Around 4:30 in the morning he awakened and felt Lever’s presence.

Beckham sits next to the bed and reads from a book of spiritual writing. He sings softly. Lever’s chest heaves as his breathing becomes deep and rapid. One eye is closed, the other slightly open. Although Beckham planned to leave around 11:30 p.m., he stays.

Beckham leaves the room briefly, telling Lever he will be right back. As he re-enters the room Lever smiles briefly at him, then grimaces. He cries two tears shortly before he dies.

*

In his final days, Lever touched many lives at Carl Bean. Volunteers worked more than 30 shifts to be with him and eventually began showing up on their own to check on him. At times, he was difficult to control and had to be restrained. He wanted to get out of bed and go home. His will, however, was stronger than his body.

Lever was 37 years old. He was a plumber and roofer before he became a volunteer office assistant in Pacoima at the Family Law Center, which provides pro bono lawyers for indigent clients. He also volunteered one day a week at a domestic violence clinic.

After years of drug abuse, he was trying to weave together a better life for him and his son, now 12. He had planned to enroll in school to become a paralegal until he tested positive for HIV two years ago.

For Lever, winter arrived early; but many people warmed him with compassion. He held on as long as he could but died before he had a chance to build the better life he envisioned.

In the end, he was right: He got too old, too fast.