Emily Chong was at a wedding last July when she struck up a conversation with Brittany Maynard.
They were both friends of the bride, so Chong knew about Maynard’s failing health and terminal brain-cancer diagnosis.
“I asked her about how she was doing,” Chong, 29, tells PEOPLE. “I said, ‘I’ve heard so much about you from [the bride]. You’re so strong.’ ”
Maynard told her how she and her family had to move to Oregon from California so she could get access to the state’s Death with Dignity Act and “how so many people wouldn’t be able to do it,” Chong says.
“We didn’t get in depth there but she planted a seed in my mind,” says Chong. “I thought, ‘Wow. This is really sad, first of all, and it’s really powerful.’ ”
That brief conversation is what ultimately led to Maynard’s powerful first video, which was released on October 6 and quickly made her the face of the right-to-die movement.
But going public was not something Maynard, 29, sought out – nor was the ensuing media attention something she was ever quite comfortable with.
“I don’t think she would have ever told her story unless I had seeded the idea in her mind,” says Chong. “At the time when I was talking to her, she was already really deteriorating and she was tired all the time.”
Dan Diaz, Maynard’s husband, agrees. Prior to meeting Chong at the wedding, the most she’d talked about was writing an op-ed, he says.
“It’s amazing and it’s great that her speaking had the effect that it had, but it really was just Brittany being true to herself,” he tells PEOPLE. “It wasn’t this intentional, ‘Oh I’m going to take this and I’ll be the poster child for the issue.’ One thing just kind of led to another.”
Maynard’s words – and gripping personal story – were front and center once again this week as Compassion & Choices, the end-of-life choice advocacy organization she partnered with to push for “Death with Dignity” laws nationwide, released a fourth video from her – one she recorded last October with a message for California lawmakers.
“It was very important to Brittany that the lawmakers hear from her directly and she knew she wasn’t going to live long enough to do it in person,” says Diaz.
“She was a Californian and she wanted them to understand what an injustice it was for her to have to move to another state to control how she would die,” he says.
Diaz, 43, and Maynard’s mother, Debbie Ziegler, 58, were at the news conference in Sacramento Wednesday morning. Ziegler and terminally ill attorney Christy O’Donnell, 46, who told her story to PEOPLE earlier this month, testified in support of the End of Life Options Act, which was introduced in January and is modeled after Oregon’s law.
Opponents say the “Brittany Maynard” effect – which has resulted in at least 15 states introducing legislation – is wearing off.
“Evidence of assisted suicide being recently rejected or coming under heavy bipartisan scrutiny in states like Colorado and Connecticut indicates that legislators are considering its broader public policy implications – how it could endanger many people,” Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund and a spokeswoman for Californians Against Assisted Suicide, tells PEOPLE.
“Where assisted suicide is legal, some people’s lives are ended without their consent, through mistakes and abuse,” she says. “No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be undone.”
After the Wedding
On July 23, after Chong returned home to New York City from the wedding, she reached out to Maynard via Facebook.
“I said to her, ‘It just seems like you have so many good ideas. Would you be interested in sharing your story with America?’ ” says Chong.
The two had also chatted about Maynard’s feelings about the need to improve the health care system and make it more accessible to those with lower incomes, so they needed to figure out which issue she wanted to focus on.
“She had a lot to share but she wasn’t sure she wanted to do it,” says Chong. “So she was like, ‘Let’s talk about it.’ I got on the phone with her.”
At first, their chats centered around Maynard writing an op-ed. Then, as Chong did web research and reached out to several different people about Maynard, it slowly changed.
One of the people Chong called was Allie Hoffman, a friend who’d worked on other social issue media campaigns. She suggested whittling down Maynard’s issues list to one – the right to die.
On July 29, Hoffman and Chong had a phone call with Maynard to pitch the idea, which included making a video of her story with limited media coverage surrounding the release of the video and teaming up with a group that advocated for end-of-life options. Maynard agreed to meet with Hoffman and film that weekend, which became the basis for the first video that was released.
“I think she was ambivalent,” says Hoffman of Maynard’s feelings about being in the spotlight. “On the one hand, she wanted to strongly use her story for change. On the other hand, she wasn’t someone who desired or valued media attention.
“And she knew how sick she was,” she says. “It was about making a commitment and seeing it through against balancing time with her family and the things she valued – walking her dogs; being with her mom, her husband.”
Afterward, Hoffman connected with Compassion & Choices, which eventually set the video’s release date for Oct. 6.
The reaction was something no one expected – including Maynard.
“At first Brittany was quite surprised,” says Diaz. “She was seeing her story and image pop up on many different media outlets. The amount of attention felt rather uncomfortable.”
Because she felt strongly about the issue, however, she agreed to do some more limited media for two weeks.
“After that, Brittany’s focus then shifted back to ‘family time,’ says Diaz. “Her symptoms were worsening and she didn’t want to be bothered by the relentless demands and insatiable requests from the media for more photos, more storyline, more details.”
Diaz, who returned to his job as a senior manager in the food industry in February, says he wants people to know neither he nor Maynard were paid for the media interviews they did do or their advocacy work.
He is committed to finishing what his wife started – no matter how long it takes.
“I promised her I’d work on this issue until it’s legal in California and elsewhere,” he says.