PHOTO: Karen Shayne at her Brentwood home, which serves as the de facto headquarters of the Women Survivors Alliance.
By LANDON WOODROOF
It was 30 years ago that Karen Shayne got her diagnosis. Thirty years ago that she crossed that line in the sand.
Cancer. She was 20 years old.
It was a long road to wellness for Shayne, but she was able to survive the disease and get on with her life, even though that life would never be quite the same.
Shayne became a successful healthcare administrator, but after a couple of decades in that field, she decided that something was missing, that she could do more.
“I said I think I’m going to look at starting some kind of women’s networking group for survivors,” Shayne remembered recently at her Brentwood home.
Shortly thereafter, Shayne and a fellow survivor sat at Rippy’s Bar & Grill in downtown Nashville and sketched out a plan on a napkin.
They would form an organization called the Women Survivors Alliance and put on a large gathering for cancer survivors called SURVIVORville. The WSA and the event would create connections between women who had been diagnosed with cancer, so that those women could mutually empower each other by sharing the experiences, wisdom, stories and understanding.
The first SURVIVORville was held in 2013 and was a huge success, with attendees from 49 different states and five different countries. Shayne and other WSA members began thinking what else they could do to further their mission and started My 2nd Act, a live, traveling storytelling event for survivors, and New Focus Daily, an online newsletter.
Now, Shayne and the WSA are rolling out a new way to engage and educate cancer survivors. UNTOLD. will consist of a blog, a podcast, a live show and a video series of women survivors sharing their stories.
The idea came about around the WSA’s five-year anniversary in 2017.
“We asked the women what they love most about SURVIVORville, and they said connecting and hearing other people’s stories and finding strength in those stories,” Shayne said. “So we came up with a project called UNTOLD.”
Shayne calls UNTOLD. “our global movement of sharing stories.”
Numerous survivor stories are already published on the UNTOLD. website. The podcast is expected to start in May, and Shayne said the video series was just recently shot. The WSA is currently under contract with a major media group to distribute the series.
Shayne knows firsthand the struggles that accompany the disease, and she has seen how the WSA has helped women find the strength to persevere and even thrive in the face of those struggles.
“They find a purpose within themselves,” she said. “Maybe it’s a renewed spirit or maybe it’s [doing] something that they believed they would never dare to do. You’re never the same after a diagnosis. People don’t realize that unless you’ve walked in their shoes. Cancer doesn’t end when treatment does, but what begins is a new life that you find within yourself. And that’s what the Women Survivors Alliance was created for.”
Shayne said that the WSA has 32 local volunteers who make the organization run smoothly.
“All of us have full-time jobs,” she said. “We just happen to give our life and our love to this organization.”
Linda Ragsdsale and Jen Neiderwerfer are two of those dedicated volunteers.
Ragsdale was diagnosed with cancer several years after she survived being shot in the 2008 terrorist attacks in Mumbai, India.
“I had talked about what to do when the terrorist was outside, and now the terror was coming from within,” she said.
Rather than despair at her diagnosis, though, Ragsdale threw a party. She asked guests to bring lemons that they had written their favorite inspirational quotes on.
Her philosophy was that cancer was just a word that she was not going to let disrupt her life any more than necessary.
“We need to literally understand that it is simply a piece of knowledge,” she said. “The day before I found out this knowledge I was working eight to 10 hours…What’s the difference between the day where someone gives me that word and the day before?”
Ragsdale understands that she may have had a unique way of responding to her diagnosis, but she believes that survivors can only benefit from a range of testimonies and coping strategies shared by different women.
“UNTOLD. is the journey of all these tales that allow women to explore the stories and the pathways that may help them to open the doorway to pass through this experience,” she said.
She has found the WSA to be a powerful vehicle for giving women the strength to live their best lives after cancer, and she also thinks the WSA’s mission helps others as well.
“The brilliance and the joy of hearing women use their voices and take you through the darkest experiences through to the other side, it not only empowers those who have yet to use their voices…but people in the audience who have not experienced this but there’s a different cancer in their own lives,” she said. “This activates them to think about it differently and approach it in a different way.”
Niederwerfer was diagnosed with breast cancer six years ago. She attended a class to help women who are in treatment, and that was where she first heard of Shayne, the WSA and SURVIVORville.
She attended a kickoff party for SURVIVORville and immediately felt at home.
“When I came in the door to the kickoff [Shayne] bowled me over at the front door with a hug and said, ‘Oh my gosh I can’t believe you’re here. Congratulations on being done with chemo,’” Niederwerfer recalled.
Over the next few years, Niederwerfer stayed involved with the WSA, helping to organize SURVIVORville conventions and even sharing her own story via My 2nd Act.
What she has gotten most out of the WSA is the camaraderie between women who have been affected by cancer. As she put it, cancer is a scary thing. When you get a diagnosis you are staring death in the face, and that can stir up a lot of emotions.
It was inspiring for Niederwerfer to be around other women who had been through that same experience and figured out how to adjust to their new lives.
“Once you survived cancer there’s a new appreciation for life and a new way you look at life because you don’t take anything for granted,” she said. “To pass that on to other survivors and other people has been super inspiring to a lot of women.”
An annual project that Niederwerfer organized is eventually going to be a part of the UNTOLD. series, she said.
A few years ago, she was inspired by another cancer survivor to put together Christmas stockings and deliver them to patients receiving chemotherapy. The original goal was to deliver 20 stockings to an oncology office.
Next thing you know “it exploded into this huge thing, and last year we delivered 300 Christmas stockings,” Niederwerfer said.
The goal of the Stuffed with Love Project this year is to deliver 1,000 stockings.
If Niederwerfer is growing more ambitious with the Stuffed with Love Project, so, too, is Shayne.
She has set some big goals for the WSA. She hopes to raise $1 million for various survivorship programs over the next few years and she wants to share 10,000 cancer survivors’ stories.
Women who want to tell their stories as part of UNTOLD can do so here. People can also support the WSA and UNTOLD. financially on that site.
Shayne said that since it is a volunteer-run organization, the WSA has no overhead. All money raised goes directly to the WSA’s work.
Even 30 years after her diagnosis, Shayne still has issues related to her bout with cancer. Now, though, she has a huge community of women she can easily get in touch with if she needs to talk about something she is going through.
Because they have all crossed that line in the sand and have stepped into new futures, and they are all eager to help each other get where they want to go.
“It’s just an amazing experience,” she said. “You can’t go to the grocery store and stand in line and have someone say something about cancer or see their hair just growing back and you just not look at them and they look at you and there’s an immediate connection. It’s the club you never wanted to belong to, but you’re honored to know everyone in it.”