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Facing death: the story of Project Nightlight

by Jerry Gorin | Off-Ramp®

Project Nightlight co-founder Cassandra Christenson had a chance encounter with Mother Theresa, who told her to start working with AIDS.

In 1992 Gail Bernstein came upon an ad in the LA Times for a 3-month training course on being with people in the final stages of their life. It piqued her interest because she'd just spent 18 months caring for a close friend, Jeffrey, who had AIDS. "Jeffrey was sweet and loving, but this was not the person who was dying. He was a monster," she says, and "after it was over, I felt like I could've done a better job."

Gail knew that death was a part of life, and that she'd have to face it again. So she decided to call the number in the ad. "I went there with a notebook. I thought I was going to get information. And I expected this nurse who only works with terminal patients to be serious, and kind of a downer. Not Cassandra."

This was Cassandra Christenson, who was, "unlike anyone I'd ever met. She's very light-hearted, a very beautiful woman, and she was brilliant. She drew me in."

By this time, Cassandra had been nursing for more than 30 years. 15 years into it, she began to realize that she wasn't very good at her day-to-day tasks. She was taking too long to finish her bed baths and she would finish her charts long after her colleagues went home. But Christenson says she did one thing very well. "When people were dying, my head nurse said, 'Cassandra, you're so good with the dying. I want you to take care of them.' I don't really remember why I was so good at that. I learned what to do by using a certain kind of common sense. If someone's really, really hurt, you touch them. You hold them. Like a child crying - you pick it up."

Cassandra quickly got a sense of what people needed. She learned to talk to them even if they appeared to be tuned out. She learned to get really close - to put the bed railing down and sit up on the bed. She learned how to be comfortable around the dying.

By the early 80’s she was doing private duty nursing around LA and her reputation was growing, but it wasn't until a chance encounter with a kindred spirit that she realized how much more she needed to do. Traveling with a couple named Kevin and Theresa, she was hurrying to catch a connecting flight at Miami International, looked back, and realized they weren't behind her. "So I go charging back through this throng of people, yelling "Theresa! Kevin! Theresa!" and who should come out but Mother Teresa! And she's with this whole bevy of nuns, all in little white outfits with the blue stripes across their foreheads."

"Mother Teresa says, 'Now tell me what you do,' and I say that I work with the dying. And she asks, 'Do you work with AIDS?" and I say 'Yeah.' But I lied. I lied to Mother Teresa! And she takes out this little skinny finger, and almost like this divine directive, she says, 'You work with AIDS!'"

When Cassandra got back to LA, she did some research and partnered with the AIDS Healthcare Foundation. She also recruited volunteers that would eventually form the core of her own non-profit, called Project Nightlight. At a time when people with AIDS were being abandoned by their families, Cassandra and her pupils were holding them in their arms.

One of her best volunteers was Gail Bernstein, who still remembers the first person she worked with.

"It was somebody who had AIDS and he had dementia and went crazy. He flipped out, he pulled all the IV's out, and blood was going everywhere, it was really something. There wasn't much I could do with him. But his mother and I got so close, because it was really his mother that needed information and compassion. She had a big family, but nobody knew what to do. Cassandra's work went through me and to the family in that case."

The volunteers met every week. "We called ourselves 'The Death Group,'" says Bernstein. "We did very serious work, but you can't do that kind of work and not laugh - otherwise you're dead, so to speak."

The Death Group kept their chins up largely behind the strength of Cassandra, who over the years began to look at death as a moment to honor and celebrate life. She wanted to help people tie up all their loose ends and feel comfortable when they left.

One of her patients was a man who puzzled his family by how long he kept hanging on. He slept in a room near his office, and when he awoke he seemed to have eyes for his office chair. Cassandra suggested that he get up and sit in it.

"Maybe he just wanted to die with his boots on, so to speak. Of course his family said no - all the worries you'd have, you don't want to push him over the edge. But I just said let's see where he goes. He had a big son who could help him, and he had all this energy. He walked to his office and sat in the chair - and remember he'd been pretty much unresponsive until then - and he reaches for his glasses, looks at his desk, and nods. His son picks him up, puts him back into bed. An hour later he dies. I laugh - I shouldn't laugh - but it's so touching and moving."

Then there was Ray. He was mostly unresponsive until one night, at about 3 in the morning, he opened his eyes.

"And he said, 'I want breakfast!' They all looked to me - I'm the nurse - and I know you shouldn't have breakfast when you're that close to dying because you could choke to death. But his wife Jean says, 'If the man of the house wants breakfast, he shall have it.' She and the housekeeper cook breakfast and arrange it delicately and bring it on a bed table. They give him little tiny bits of scrambled egg and a piece of toast and he sat there upright, like the man of the house, and he ate and chewed and picked up a napkin and spit it out. It was just so dear. It honored him, deeply.”

Meanwhile, Cassandra also remembers the times she drove to people’s homes and couldn’t bring herself to get of the car.

"It's very painful. I think it's in our culture. We cleaned everything up. We have mortuaries instead of the dining room table - that's where they used to put people after they died. Death was something we knew about. Now nobody knows what to do. The person doesn't look like what they used to look like. And there's tubes and monitors and machines. It's very scary. And what to say? People are thinking, I'm not good at intimacy. It's so much easier to send flowers and walk away."

Cassandra Christenson retired in 1997. Gail stopped volunteering at Project Nightlight around 1995. Ten years later, Gail found out her sister-in-law had a brain tumor and had 3 months to live. She says she still had anxieties – about how to handle it, how to make sure the surviving children would be OK – but by that point something had changed.

"The fear of the process of dying was removed," said Gail. "It was suddenly not this mystery, this unknown. It had facts - it had a beginning, a middle and an end. Cassandra demystified it for me. That's what she did."

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