In late February, when Lindsey Motley reached the last chapter of her too-brief life, her story had been read a half million times. It was a 21st-century bestseller in the medium that fits most naturally within the lives of 29-year-old Lindsey’s generation.
Through CaringBridge, Facebook, Twitter and other social media websites, hundreds of thousands of people beyond Lindsey’s close-knit Greenville family and community could rejoice and pray and weep with an achingly young woman’s cancer journey. Lindsey was diagnosed with colon cancer when she was 17 weeks pregnant with Lilla, who now is 2.
“What she wanted to do with her disease is share it, to show people when you get sick you can still teach and be helpful,” says her husband, Dr. Jay Motley, an anesthesiologist, who helped her keep a CaringBridge journal updated after her cancer diagnosis in 2013.
Although she began the online journal to share intimate details of her cancer treatment with family and friends, Lindsey allowed her holding-nothing-back words to be viewed publicly. For instance, at nearly 18 weeks pregnant, on April 12, 2013, she wrote about preparing for surgery: “My uterus will just be moved out of the way during the procedure, and should cause little to no stress to the babe.”
The journal was easier for Lindsey than explaining in dozens of phone calls what she was going through, Jay says. “It felt natural for both of us. We’d gotten used to sharing and connecting with people through social media.”
When illness goes viral
The worldwide reach of Lindsey’s posts was a shock, he says.
The couple received supportive messages from active-duty soldiers and people as far away as New Zealand. Katie Couric, of news anchor fame, tweeted about Lindsey this past January during the viral Twitter, Instagram, and Facebook campaign to light luminaries for Lindsey. “A beautiful story of a community coming together to support a 28-year-old mother battling cancer #prayersforlindsey,” Couric wrote.
Lindsey’s experience shows how quickly virtual emotional connections can spread. Her CaringBridge journal site was viewed more than 501,000 times.
“Our research teaches us that one of the main differences between face-to-face communication and social media communication is that social media has tremendous reach,” says Joseph P. Mazer, director of the Social Media Listening Center at Clemson University.
“It becomes viral because people can connect with it on different levels,” says Janet Kwami, a communication studies professor at Furman University. “In the case of grieving and cancer, there is a lot of space people find online to let out their emotions.”
The topic touches both Kwami’s professional and personal life: She was diagnosed with breast cancer in 2012 when she was pregnant with her youngest daughter, who now is 3. Kwami followed Lindsey’s story, drawn in by their similar experiences.
“I understood Lindsey’s struggle and connect with that,” Kwami says. “Social media can be a way for networking and promoting good.”
The new sympathy card
Social media posts and blogs suggest an immediacy to what’s happened and an opportunity for readers, wherever they are, to interact in some way with the writer. Traditional written communication, like get well and sympathy cards, is restrained by comparison.
“I have talked to hundreds of people who say they have a stack of condolence cards on their dining room table, but they’ll never have the energy to open all of them,” says Fredda Wasserman, a licensed therapist in Los Angeles certified in death, dying and bereavement.
People who have grown up in the social media era often say they have read all of their online sympathy posts, Wasserman adds.
Greenvillian Erin Hinson, who is in a running group with Jay Motley, posted a photo of the Hinson family’s 10 candles in support of #lindseyslights on Jan. 27. “Surrounded by light,” she wrote. She reposted the photo on Feb. 24, the day after Lindsey died.
“I didn’t know that 13 days after Lindsey had her memorial service, we would be having ours,” Erin says, referring to how her husband, Russell, died on March 12 from complications related to arteriovenous malformation (AVM), a progressive, congenital condition.
“I remember thinking about why Lindsey’s death affected so many people and why so many people wanted to be part of her journey,” Erin says. “We had followed her story for a while, and we felt like we had known her and her struggle.”
The Hinson family’s daily joys and challenges also have been chronicled on social media sites, including Instagram, Facebook, and Erin’s WordPress blog, called “Two Possums and a Bug.” Her blog mostly is about their 9-year-old twins, Poppy and Charlie, and their youngest, Mary Hazel, age 5.
“When Mary Hazel was a baby she was diagnosed with cancer,” Erin says. “I started my blog because we were inundated with well-intentioned questions.”
Mary Hazel had Wilms’ tumor, a rare kidney cancer that resulted in her having one kidney removed. “It was a fairly quick process because her cancer had not spread to her lymph nodes,” Erin says. “We continue to go to the hospital regularly for scans.”
Russell Hinson’s passion was writing fiction, but he never wanted to write about his condition, she notes. “I think he always was more keenly aware of his mortality than most people are, and I think his writing was more of an escape from the harshness of that.”
When Russell died, after several months of being in and out of the hospital, word spread quickly through Facebook. Erin posted a family photo and the words, “I sang the same songs my mama sang to me, and that I sing when I tuck in my children at night, to my sweet husband when he passed away this morning at 12:34 with dignity and grace like the gentleman he was.”
Online sympathy fundraising explodes
Dozens shared Erin Hinson’s posting and photo, and a close friend started a compassionate crowdfunding Web page on YouCaring for the family – now in financial need after losing Russell’s income as an information technology expert. Within a month, the site raised more than $35,000 and was shared 756 times.
“It was a little strange to accept that, but it was for the children, primarily, to make sure we can stay within the community that has supported us with all of our challenges and keeping them in the school they’re in,” Erin says.
Crowdfunding through social media is easier than hosting a barbecue fundraiser for a family in crisis. It also gives people from far away an opportunity to help, Mazer says.
And it’s fast: Greenville Police Department officer and Iraq war veteran Allen Jacobs was shot and killed March 18 while on duty. By April 18, a Gofundme.com webpage, set up by the nonprofit Heroes in Blue, had raised more than $190,000 for Jacobs’ pregnant young widow and their two children.
The money came from people coast-to-coast. As one California contributor wrote, “I wanted to be sure to thank this officer for his service to our country.”
Studies show that people are drawn to social media and online crowdfunding to connect and empathize with others, Kwami says.
“We see that in Lindsey’s case, where she had fundraising events [for fighting colon cancer],” Kwami says. “Social media disseminated information and connected her with people who could not be physically at the event, but wanted to make a difference and connect with her because they have family members with similar problems.”
Lindsey’s CaringBridge entries provided positive messages wrapped around details of her cancer treatments. In typical Lindsey fashion, she wrote in her first entry on April 11, 2013, “Jay and I both are overwhelmed with the amount of support that we’re receiving… via text, call, email, Facebook… you name it! WOW!”
From a friend’s perspective, Lindsey’s social media updates were a lifeline, her longtime friend Tonia Jeray says.
“It gave me a sense that I was involved and that I could access her and let her know how much I cared for her and loved her,” Jeray says. “It gave me a purpose to reading her words, and I read CaringBridge continuously.”
The Motleys traveled to Cleveland, Houston, and Durham, N.C., for surgeries and treatment. Each trip expanded their social media neighborhood of friends and followers.
People who “met” them first through social media also considered themselves friends.
Cancer survivor and Huffington Post blogger Danielle Ripley-Burgess wrote a tribute to Lindsey, her brave participation in clinical trials, and ability to remain positive.
“But more than anything, Lindsey let people watch her go through this,” the blogger wrote. “And because of it, she’s changed the world.”