Betsy Davis sat in her bedroom in Ojai, a US 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 travelling the physical and emotional distance for me. These circumstances are unlike any party you have attended before, requiring emotional stamina, centredness, 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.”
Three years earlier, Davis had been diagnosed with ALS, or Lou Gehrig’s disease, a merciless illness that renders muscles unusable and speech unrecognisable.
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 favourite foods, listening to favourite music and reliving favourite 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 US states have death with dignity laws – Oregon, Washington, Vermont and now California, whose End of Life Option Act took effect in June. …
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, said.
“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 modelled 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.”
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’ 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.
Betsy Davis was allowed a choice, because she lived in Oregon. I hope that people in New Zealand in the same circumstance will one day also be allowed that choice.
An incredibly moving article.