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Woman with ALS throws 'rebirth' party before ending her life

After losing nearly all mobility from Lou Gehrig's disease, or ALS, artist Betsy Davis said goodbye to loved ones at an end-of-life party.
/ Source: TODAY

Betsy Davis threw herself a farewell party none of her friends or relatives would ever forget.

She wanted loved ones to send her off on her next adventure, one like her other travels abroad. But this time, she would not return.

The 41-year-old homebound artist with Lou Gehrig's disease, also called amyotrophic lateral sclerosis, or ALS, held a two-day gathering last month before taking a fatal combination of drugs and becoming one of California’s first residents to use the state’s new law allowing physicians to help the terminally ill end their lives.

“She knew early on that she would rather not be stuck in a horrible state of total body paralysis and slowly suffocating to death,” said cinematographer Niels Alpert, an old flame and close friend who was with Davis in July 2013 when she received her official ALS diagnosis.

Betsy Davis ALS farewell rebirth party
Friends gathered around Betsy Davis on the porch of her California home.Niels Alpert

By the time everyone gathered at Davis’ Southern California home in Ojai on July 23, the painter, sculptor and performance artist could no longer stand or even scratch an itch. She could barely speak or use the edge of her pinkie to tap out words on her electronic tablet. She spent most of her days in bed and faced choking each time she ate or sipped water.

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In an email she sent a year ago to her sister that detailed her physical deterioration, Davis made it clear she didn’t ever want to rely on feeding tubes and ventilators.

“I’d rather be free than entombed in my body,” she told her sister, who wrote about Davis' death and the law that helped end her life in an essay for The Voice of San Diego.

ALS is a neurodegenerative disease that has no cure. After trying various alternative treatments, Davis started thinking about ending her life. By the time California enacted its new law in June, she already had shared plans for her “rebirth party" with friends.

Betsy Davis ALS farewell rebirth party
The party's only rule? "Do not cry in front of me," said Davis.Niels Alpert

“It’s not a trip you’re looking forward to, in the sense that it’s a tragic, sad thing that you’re going to be a part of,” said Alpert, who flew in from New York. “But there’s no question when someone asks you to be there for them in their final moments, there’s only one answer.”

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Davis understood she would be demanding a lot from her loved ones at the gathering.

“These circumstances are unlike any party you have attended before, requiring emotional stamina, centeredness, and openness,” she said in her email invitation.

Betsy Davis ALS farewell rebirth party
Davis listened as a friend played the cello.Niels Alpert

About 35 people arrived for the celebration. They made cocktails and ate pizza and tamales. One guest played a cello, another the harmonica. Others worked on art projects.

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“There are no rules. Wear what you want. Speak your mind. Dance, hop, chant, sing, pray ... but do not cry in front of me. OK, one rule,” Davis instructed everyone. "But it is important to me that our last interactions in this dimension are joyful and light.”

Davis traveled from room to room, mingling with guests from her electric wheelchair. She encouraged friends to try on clothes from her closet and laughed over the ensuing fashion show. She also invited guests to take home books, knickknacks, paintings or some other “Betsy Souvenir” from her home, each labeled with a sticky note explaining its significance.

Betsy Davis ALS farewell rebirth story
Niels Alpert

Davis had laid out a detailed timeline of events for her party, including the exact hour she planned to make her “departure.”

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California is the fifth and most recent state to legalize right-to-die legislation affecting the terminally ill. Critics have expressed concern that such measures are open to abuse by relatives taking care of terminally ill patients. Others say those seeking assisted suicide suffer from treatable depression.

Kelly Davis said that was definitely not the case for her sister.

“Several months ago, I asked her if she wanted to try an antidepressant and she said, ‘Kelly, I’m not depressed,'” she said. “And she wasn’t. She knew exactly what she was doing.”

Betsy Davis ALS farewell rebirth party
A friend fixed a bow on Betsy Davis’ kimono as her sister, Kelly, looked on.Niels Alpert

On the second evening of her party, July 24, Betsy Davis was helped into a kimono she bought in Japan and taken to a hillside next to her home. She was laid on a makeshift bed beneath a white canopy. Around 6:45 p.m., as the sun set in front of her, Davis drank a combination of morphine, pentobarbital and chloral hydrate and quickly slipped into a coma. She died four hours later.

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Alpert called it “Betsy’s last great piece of performance art,” and her sister agreed.

“She was always challenging people’s notions of whatever issue she was trying to tackle with her artwork. This is no different. It was another one of her grand visions,” Kelly Davis said. “It offered commentary on how we handle death and offered up another way to do it.”

Alpert said it also was characteristic of his friend's unwavering personality.

“She was always very determined. She did things her way. Right up to the end, she did it her way,” he said.

Next June, Betsy Davis's friends will meet again to carry out one more wish. They will gather at Joshua Tree National Park to scatter her ashes “in the late afternoon as the desert light is becoming beautiful."

Her sister said, “As you can imagine, she’s ordered us all to throw an amazing party.”

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