The Washington PostDemocracy Dies in Darkness

A terminally ill woman had one rule at her end-of-life party: No crying

Amanda Friedland, left, fixes a bow on her friend Betsy Davis’s kimono as Davis’s sister, Kelly, looks on. (Courtesy of Niels Alpert)

Her death, much like her life, would be a work of art.

Betsy Davis sat in her bedroom in Ojai, a valley town surrounded by the California mountains. On a windowsill near her bed was a collection of crystals and gems she had brought back from her adventures.

Her caregivers routinely placed her iPad on her lap and she would type — slowly poking the keypad with her pinkie.

This time, she was writing an invitation for her farewell party.

“First, you are all very brave for sending me off on my journey,” she wrote in an email last month to family members and friends. “Thank you so much for traveling the physical and emotional distance for me. These circumstances are unlike any party you have attended before, requiring emotional stamina, centeredness, and openness. I strongly encourage you all to connect with every person at the party — this will not only benefit you but me as well.”

Californians gained the right to die, but the terminally ill who wanted it have to wait

Three years earlier, Davis had been diagnosed with ALS, or Lou Gehrig’s disease, a merciless illness that renders muscles unusable and speech unrecognizable.

Davis did not want to experience death the way the disease typically demands, her family and friends said; she wanted to celebrate her life — eating favorite foods, listening to favorite music and reliving favorite memories with those who meant the most to her — then slip away surrounded by love and support.

“There are no rules,” she wrote. “Wear what you want. Speak your mind. Dance, hop, chant, sing, pray … but do not cry in front of me. Okay, one rule. But it is important to me that our last interactions in this dimension are joyful and light. If you need to cry, there will be designated crying areas … or just find a corner.”

But, she told them, “I AM allowed to cry.”

“One of the symptoms of ALS is uncontrollable laughing/crying. So, in effect, I’m not crying because of you, but merely because my neurons are having a meltdown. However, if I laugh, it probably is because of you.”

ALS, which stands for amyotrophic lateral sclerosis, is a neurodegenerative disease that afflicts some 20,000 Americans at any given time, according to the ALS Association. On average, those who have been diagnosed with ALS are expected to live two to five years, the association says.

In recent years, terminally ill patients like Davis have drawn attention to the much-debated issue of right-to-die legislation. Currently, only four states have death with dignity laws — Oregon, Washington, Vermont and now California, whose End of Life Option Act took effect in June.

Another terminally ill woman, Brittney Maynard, was a relentless proponent of such legislation in the period leading up to her own death.

Maynard, 29, had been diagnosed with a fatal brain tumor in 2014. She ended up leaving California, which had not yet passed legislation, and moved to Oregon, where she could end her suffering under Oregon’s Death with Dignity Act.

That November, she took lethal drugs prescribed by her doctor and died in Portland.

How Brittany Maynard may change the right-to-die debate

‘She wanted to challenge the notion of death’

After a drawn-out battle in the California legislature — which Davis’s sister, Kelly Davis, recently wrote about in the Voice of San Diego — the state’s End of Life Option Act passed last year. It was only recently implemented, allowing Davis to become one of the first patients to use it.

California’s new law states that the patient must be at least 18 years old, terminally ill and expected to die within six months. The patient must also be mentally capable of making the decision to die and physically capable of self-administering the aid-in-dying drug, according to the law.

It adds that using an aid-in-dying drug under the allowed circumstances “is not suicide” and that medical personnel and insurance companies should not treat it as such.

In her piece for the Voice of San Diego, Kelly Davis wrote:

My sister is an example of exactly what the law intended to do: allow a dying young woman the ability to assert control over the chaos and uncertainty of terminal illness. She turned death into a reason to celebrate, and she was there to enjoy the party.
Opponents of the aid-in-dying law have argued there’s potential for abuse: that chronically ill people could be coerced or compelled to take their own lives so they’re no longer a burden. But the law has safeguards to ensure that doesn’t happen. I encourage anyone who doubts this to read the California Medical Association’s guidelines for physicians treating patients who want to use the law.
After following my sister through the process, I almost want to say the law’s requirements are overly cautious, yet I understand why that caution’s necessary.

Betsy Davis, a 41-year-old artist with wavy red hair, freckled skin and an appreciation of beauty, had to use a wheelchair, having lost muscle control in her legs. She was struggling to use her hands, to speak, to swallow.

“The idea of her taking charge of her departure was something she had talked about from the early stages of the diagnosis because everyone knows where this disease goes,” Niels Alpert, a longtime friend who once dated her, told The Washington Post. “She knew she would rather take control of her final destiny before she entered total locked-in syndrome and was completely helpless.”

He said Davis knew that she needed to do it soon — while she could still use her hands to take the lethal medication.

She decided it was time, her family and friends said, and she set the date for a two-day celebration at her Ojai home.

“She knew she wanted a party; she wanted a gathering,” Kelly Davis said, adding that her sister “wanted to challenge the notion of death and a big, happy gathering was a way for her to do that.”

And, in her death, it seems, Davis also wanted to bring others closer together.

“What she really wanted was for everyone to reconnect,” Kelly Davis said, adding: “I think she knew what she was doing — she was creating a support group.”

On the weekend of July 23-24, more than 30 people came from across the country for what Davis called her “rebirth.” They arrived at a home filled with mementos from her life — artwork, books, clothing and keepsakes from her worldwide travels, such as desert sand from Jordan and incense from Japan.

Each item had a blue Post-it note stuck to it with a name of a friend she wanted to pass it down to. “Let me live on through you!” she wrote in her email.

Davis asked her friends to try on her clothes and take items they wanted, Kelly Davis said. Some men in the group tried on her dresses, Kelly Davis said, and modeled them to make her laugh.

They ate pizza and hot tamales.

They listened to Britpop and indie rock, including New Order and the Pixies.

They watched a film, “Dance of Reality,” by Chilean director Alejandro Jodorowsky.

They huddled together on her porch, where friends played the harmonica and the cello.

They talked. They laughed. And, at times, some of them stepped away and cried.

“She was full of smiles. She was happy,” said Alpert, her friend from New York.

He added: “She was very happy to see her best friends and most beloved family members, so that aspect was joyful. Of course, underneath that, we were all feeling a deep sense of pain and grief.”

Kelly Davis said it was “really remarkable how joyful everything was” but that, every so often, she would have a “reality check” about how the party would end.

“I would look at my watch and say, ‘In five hours, my sister will no longer be living,’ ” she said, crying. “You just have to accept it. You just have to acknowledge it and move on.”

‘She cried a bit and we wiped her tears away’

That Sunday night, as the sun started to set, Davis headed toward a hillside outside her home with her family and friends to watch the sky turn pink.

First, Davis told her father that he had always been her hero, Kelly Davis said. And she told her sister, who is a journalist, “‘Don’t stop trying to make the world a better place.’ ”

“I was crying,” Kelly Davis said.

Betsy Davis’s caregivers helped her slip into a blue-and-white kimono that she had bought in 2014 with her friend, Alpert, during a bucket-list trip to Japan, Alpert said. A family friend drove her up the hill in his new Tesla.

There, her family members and closest friends sat in chairs under a white canopy facing California’s setting sun.

Her caregivers helped her onto a bed, where she would soon take a cocktail of morphine, pentobarbital and chloral hydrate mixed into a coconut milkshake to “mask the taste,” her sister wrote in the Voice of San Diego.

Davis’s kimono had gotten disheveled during the trip up the hill, her sister said, so Davis turned to her friend, stylist Amanda Friedland, and asked her to fix the sash.

“Betsy lived her life as an artist and left her life in an artistic way,” Alpert said. “She wanted it to feel beautiful and in accordance with how she lived her life.”

One by one, friends who could bear it said their goodbyes.

“It was a very challenging moment — what to do, what’s okay,” Alpert said. “Nobody has a road map for an experience like that, so we were just feeling our way through it.”

It was the only time all weekend Davis cried, her sister said.

“That was tough for her because she didn’t want anyone else to be sad,” Kelly Davis said about the goodbyes, adding: “She cried a bit and we wiped her tears away.”

‘I felt like after an hour, she was gone — that her spirit was gone’

With only her physician and her family by her side, Davis chugged the concoction, lay down and, almost immediately, slipped into a “peaceful” sleep — a four-hour coma before her eventual death, her sister said.

Kelly Davis called it “a surreal moment” to witness.

“I sat with her about an hour,” she said. “I felt like after an hour, she was gone — that her spirit was gone.”

“Yeah, it’s hard to look,” Alpert said. “Those of us who spent time by her side while she was in a coma, it was very moving and emotionally challenging, but I was glad I was able to be close to her in that very last portion of her life.

“I left shortly after she passed.”

Davis died about 10:30 that night, her family said.

Alpert, her friend, said two of Davis’s best girlfriends put oils on her hands and feet after she passed away.

“Betsy wanted her last weekend to be exactly what it was,” Alpert said, “to see her friends and family one last time before saying goodbye forever.”

Read more:

Cancer patient Brittany Maynard, 29, has scheduled her death for Nov. 1

Brittany Maynard may wait to end her life, but, like others, she knows the time will come

Cancer patient Brittany Maynard, scheduled to die Saturday, checked last item on ‘bucket list’

Brittany Maynard, as promised, ends her life at 29