Death gets personal

When Paula DeCosse heads out to meet with her monthly social group, her husband tells her to have a macabre time.

Sonjie Johnson has heard similar sentiments.

"Our daughters called us the death group," says Johnson. "As soon as that started, we immediately tried to pick a name so we didn't sound so grim. We didn't want to sound like we were hit men."

Eventually they came up with "sorelle," which translates to "sisters" in Italian. But the change in name didn't alter the goal of the group -- to discuss death.

"I think our purpose was to really look at the whole process, what it meant to us, and how we could cope and help each other cope," explains Johnson. "My mother was in a nursing home and she was in her 90s. So I was thinking a lot about the process of dying, especially about dying well, being the overachiever that I am."

The sorelle range in age from their late 50s to their late 60s. Some have known each other for decades. Others are friends of friends. It was a shared desire to talk about end of life issues that brought them all together.

"I think it's our attempt maybe to bring some ritual back into our lives so it isn't just, 'Get the ambulance, drag her to the hospital, call everybody when she's ready to go.'"

"Death was a topic that you didn't talk about with anybody, like a taboo subject," says Nordis Heyerdahl. "Part of what I liked about the group was that it was demystifying this language."

Heyerdahl has been part of the sorelle since the group's inception nearly 10 years ago. Over the last decade, Heyerdahl and the others have read poems and books about death. They've written their own obituaries. They've even penned theoretical final letters to their families.

Paula DeCosse took the step of buying a cemetery plot with her husband.

"We wanted to be near the place we loved, and we love Minneapolis and we love the lakes so we got a little plot at Lakewood Cemetery," says DeCosse. "But it's not in the middle of things. My husband and I are both introverts. So we picked a plot way over to side by the bushes. We thought that would be perfect. We're right on the periphery looking at everybody else, but they can't see us too much."

When DeCosse was younger, she read up on theories of the afterlife. But these days, she says she rarely thinks about what might happen to her after she dies.

The way she sees it, there's just no way to know what, if anything, comes after death. So she chooses to focus on the things she does have some control over, the things leading up to death.

Sonjie Johnson says those are the things the sorelle put their energies into.

"We would talk about how we wanted the room to be when we died. Paula wanted classical music, I remember, and perhaps some curtains waving. And I wanted fresh air. I wanted the window open," says Johnson. "I liked thinking that these other women might come to my room and say, 'Open that window. She needs air.' Even if I was in a coma and didn't even know there was air coming through the window. We would get off on imagination things, how did we want our death to go."

Nordis Heyerdahl says those requests may actually be a subtle way of trying to ensure that someone's around when she's dying.

"What was more important to me," explains Heyerdahl, "was that someone was there caring and being present. I think that matters more than anything, that I'm not alone, that somebody is there kind of paying attention to what I had said I wanted."

The sorelle are part of a growing number of Americans who are interested in taking control of their death. Some plan their own funerals because they don't want to be a burden on their loved ones. Others design their own grave markers because they want a chance to make a final statement.

Sonjie Johnson thinks this trend says a lot about today's society.

"I'm sure my grandparents never had any discussion about how they wanted to die, what they wanted at their funeral. They didn't have the time, they didn't have the leisure, they didn't have the resources to do that," says Johnson. "Technology has allowed us to have more control over our lives. And we have been either led to believe or decided ourselves that we deserve these choices, that we deserve to pick how we die."

Paula DeCosse thinks death used to rely much more on ritual.

"If I think of my grandfather, a Norwegian farmer in southern Wisconsin, his funeral would have been at the church. He couldn't have changed it, I don't think. The graveyard was next to the church, there was the family plot, so it was all arranged," says DeCosse. "And I'm thinking, I don't attend a church like that. I can pick any cemetery. My children are across the country from one another. My sisters and brothers are on the coasts. We're not living close as a family either."

DeCosse says we've lost many of the rituals surrounding death. She says that's probably why she sought out a group like the sorelle in the first place -- to regain some of that ritual.

"I want some of that in my life," says DeCosse. "And these are people that are seeking, too. To have company in that search, even though we might not go to the same place or come up with the same things, that's really comforting."

Sonjie Johnson agrees.

"I think it's our attempt maybe to bring some ritual back into our lives so it isn't just, 'Get the ambulance, drag her to the hospital, call everybody when she's ready to go.' I think we have really tried to create a sense of ritual for ourselves, each individually. I think that's what we've been doing."

Johnson realizes her death may not go exactly as she's planned. But she says it's the process of planning that's made her feel much better about the idea of her own death.

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