Lucy Watts is afflicted with a rare neuromuscular disorder that has led to multiple organ failures, including to her intestines and bladder. She requires 24-hour care, is wheelchair- and bed-bound, and is fed through a tube. She’s in her 20s, and says that her doctors have told her that she may not live to see 30.
Physically limited, Lucy is intensely digitally active. She spends much of her waking time online, posting to multiple social media accounts, blogs, and her website. While some of the content is personal, she devotes much of her energy to advocating for the rights of other disabled and chronically ill people— work that has led to her being honored by the British government.
Lucy, who lives near London, thinks a lot about how to preserve all of her digital content for after she has gone. She has placed her most important documents and online passwords on a USB memory stick and has designated her mom as her legacy contact on Facebook and other social media sites. But Lucy also worries about the bigger picture of how she will be remembered.
“That’s what I’m struggling with,” Lucy says. “For my family, it’s to hear me, to see me, to remember me as I am today, the person they knew and loved, and to have memories shared and stories shared of our lives together.”
I found out about Lucy after receiving an email from the Wall Street Journal with the eye-catching subject line of "digital afterlife." The message explained that Joanna Stern, a reporter at the paper, was trying to help “a young woman facing a terminal illness and she's looking at ways that tech can help preserve her legacy. As Joanna searches for a solution, I think a natural stop along the way would be to talk to someone like you.”
I got to meet Joanna, Lucy, and Lucy’s mom, Kate, and we did more than just talk. Using HereAfter AI’s technology, we spent hours recording Lucy’s life story and then used the audio to create an interactive, life-story sharing Legacy Avatar. The most fulfilling moment was watching Lucy and Kate interacting with the finished avatar for the first time.
“Do you feel like Lucy and James captured Lucy in this?” Joanna asked.
“Absolutely,” Kate replied. “It’s—I don’t know what I expected, but it’s really good. I feel overwhelmed.”
To learn more about more about Lucy and her quest, be sure to watch the excellent short documentary produced by the Wall Street Journal. It’s called E-Ternal: A Tech Quest to ‘Live’ Forever, and you can see it here: www.wsj.com/video/series/eternal