Putting It on Paper: Patient Writing Program Encourages Expression During the Cancer Journey
Kathleen Emmets was 35 when she was diagnosed with stage 4 colon cancer, and she immediately found an outlet in writing.
From the time she was told her disease was inoperable and that her days were numbered, through better moments after she learned that treatment was available, Emmets wrote everything from social media posts to longer essays. Among that work is a recent piece looking back on her initial devastating prognosis, titled “If I’d Known I’d Survive…
” which describes the beautiful moments Emmets has experienced due to decisions she made while believing she had 18 months to live.
The piece came to her in a moment of pure inspiration. “The way I wrote that piece was exactly as it played out,” she recalls. “Just sitting and looking over at my boyfriend. Going outside and taking a breath. Thinking of the enormity of what had gone on in the past six years. And I just started writing.”
On April 3, Emmets’ piece was featured in the ninth annual night of live readings hosted by the Visible Ink writing program based at Memorial Sloan Kettering Cancer Center (MSK), in New York. After she became a patient there, Emmets joined the program that helps patients to write about their journeys, and her work within the group helped her hone and finish the essay.
Every fall, Visible Ink has a call for submissions, and from hundreds, a selection committee chooses no more than 15 to be performed “by amazing people, mostly from Broadway, who come in and do this pro bono,” explains writer Judith Kelman, who leads Visible Ink. The performers are actors, singers and dancers, including Tony Award winners.
Greg Kachejian, an actor who used to run the now-defunct patient library at MSK, first suggested bringing the pieces to life by putting together a performance. “He has a lot of friends in the Broadway community,” Kelman says, and puts the presentations together “in a rhythm that works for the evening … We have some pieces by men, some by women, some that are funny, some that are really rough and difficult.”
Emmets’ essay, read by actress Catherine Augier, closed this year’s performance. “I was deeply honored that they thought enough about the piece to do that,” she says.
Finding Catharsis in Writing
Emmets started writing on social media, specifically Facebook, using it as a platform to update everyone in her life at once. Her first post, the day after she was diagnosed, just read: “cancer schmancer.”
“It was just a more in-depth way of explaining what was going on,” Emmets says. Social media not only allowed her to express herself, but gave her a support system and a community.
It was in treatment at MSK that she discovered Visible Ink. Founded in 2008 by Kelman, Visible ink pairs patients with writing mentors and allows them to write about anything they’d like. Since its start, the program has expanded from eight patients and one mentor to over 1,600 patients and more than 200 mentors. The program is free of charge and open to any patients, regardless of age, background, severity of illness, writing ability, educational level or perspective.
All the patients contact Kelman first for a conversation. “I hear about what they’re being treated for and what their wish is in terms of expressive writing,” she says. It was always important to Kelman that participants be allowed to “express themselves on any topic, in any form.”
Kelman referred to the vast amount of evidence supporting expressive writing as an intervention, commenting that the writing allows patients to “get back in charge of their personal narrative, as they define it.” With cancer treatment, patients are often told and prescribed a lot of things to do. “It’s necessary to abdicate a part of your personal self in order to go along with that,” Kelman explains. “If I said, ‘Come in every Tuesday at 12:30 and write about your illness,’ I’m just another treatment. I’m just another stricture.”
Normally, after speaking with Kelman, each patient is partnered with a mentor. When Emmets came along, Kelman decided she wanted to serve as mentor herself. Since then, Emmets has written for magazines and websites but, she says, doesn’t submit anything “without sending it to Judith first. She is my editor and my friend.”
Of the program, Emmets claims, “I honestly feel like I owe everything to it, because Judith made me a better writer.” She goes on to praise the program, saying, “It helped me give voice to my story. It helped me make sense of what has happened.”
During treatment, Emmets says the writing was cathartic for her. “There’s a safety in treatment, because you feel proactive,” she explains. “I find it most difficult to write about it now, emotionally.” Emmets related the feeling of being done with treatment for cancer to that of being a soldier finished with service. “You put in your time and they just say ‘goodbye,’ without giving you the tools to deal with everything.”
Emmets enthusiastically recommends Visible Ink to everyone being treated for cancer at MSK. Patients elsewhere can write on their own or look for writing groups at their hospitals or in their communities; hospital social workers may be able to recommend groups.
“It will help you sort out the thoughts in your head,” Emmets says. “You’re going to have really phenomenal days, and you’re going to have awful days. And if you journal, and if you keep track, during hard days you can look back and you can remember the great days, and they can pull you through. And you can read (about the horrible days) and you can pride yourself that you pulled through that.”
She continues, “Everyone has a story. And every story has value. For someone to take time out of their life to help you find your voice and help you tell your story, it’s an incredible gift that they’re giving to survivors, to patients.”
Reaching Others Through Writing
To see her own writing brought to life by a Broadway actor during the MSK event was a surreal experience for Emmets. At such a performance, she says, “you are immersed in the emotion of it. And to have people come up to me after the performance and say that they connected with my piece, to know that I had an impact on someone, that they saw their own story in mine, is amazing.” To Emmets, that’s what Visible Ink is all about, “that connection with other people.”
It wasn’t just watching her own piece being performed that was moving, though. Emmets explains that the entire show is a reminder of “this common human experience. While we think that we’re on this island of our own emotions and our own journey, that’s not the case. You hear the numbers of people who have cancer, and you can’t really connect with ‘millions.’ But (you) see it on stage and feel the emotion coursing through all these stories.” She says the sentiment might seem “trite,” but that connection is a reminder that “You’re really not alone.”
Kelman offered her own view of the performance, saying that the program recognizes patients for “who they are, not what they’re sick with. That really is important to people. They are not seen as a kidney cancer patient, or a brain cancer patient. Just a person, with a story.”