Kathy Riley, former screenwriter and current associate director of cancer support programs who holds master’s degrees in narrative medicine and public health, shares how her son’s and sister’s cancer journeys inspire her to help others facing illness.
Every one of us has a unique life journey that brought us to where we are. For some, there is a life-jolting moment that hits like a thunderclap on a cloudy day, redefining “life before and life after” and leading to profound personal change.
The day Kathy Riley and her husband Christopher’s then five-and-a-half-year-old son Peter was diagnosed with a brain tumor, the Los Angeles family’s whole life was redefined. During a medical exam, the doctor told the couple to take Peter straight to the ULCA Medical Center where a neurosurgeon was waiting to meet them. “Don’t stop anywhere,” the doctor ordered.
Kathy hasn’t.
Fast-forward 30 years, and the Rileys’ story continues to unfold. Peter is a long-term survivor of brain cancer; though it has been an enduring and complicated journey for the 36-year-old and the whole family including Peter’s three sisters. Today, the Riley family includes three grandchildren.
Years after Peter’s diagnosis, Kathy lost her younger sister, the mother of two sons, who fought her cancer to the end when she died at age 49. Kathy chronicled the complexities of her grief, and a grief that can resonate with so many, in a peer-reviewed article, “Grieving lost selves: Throop’s concept of presencing forth of an absence.” It was published in Spring of 2024 in the journal Pediatric Research.
Enter: The Practice of Narrative Hope and Healing
Those painful experiences/defining moments have left an indelible, yet transformative mark on how Kathy shows up in the world. Like the characters in a screenplay, she has scripted an innovative role that allows her to be present and sensitive in the moment when others let the pain that lives inside themselves out, a healing experience that often occurs through narrative workshops.
At one point following Peter’s diagnosis (which Kathy says “changed the course of who we are”), she discovered the book Narrative Medicine: Honoring the Stories of Illness, by Columbia University’s Dr. Rita Charon, the founder of the pioneering movement.
She was immediately hooked by the marriage of art and science. “I thought ‘What a revolutionary concept,’ and asked myself, ‘How can I do this, what else can I do?’” Narrative Medicine seemed like the perfect career opportunity to combine her writing, public health experience and lived experience as a patient’s caregiver.
“I realized that part of what I can contribute to this field is my theoretical and academic experience with the real-life storytelling that brings them to life to help people heal,” says Kathy. “I immediately explored how I could apply narrative medicine to cancer.”
Prior to graduating in 2023 with a Master of Science in Narrative Medicine from the Keck School of Medicine at USC, Kathy received her Certification of Professional Achievement in Narrative Medicine from Columbia University in 2020. Currently, she’s a facilitator for Columbia’s Narrative Medicine virtual group sessions and facilitates workshops in Los Angeles with providers and cancer patients and survivors.
Prior to narrative medicine, Kathy started her career as a screenwriter. As young newlyweds, Kathy and Christopher packed up their life belongings in a truck and headed from Kansas City, Kansas to L.A. to write for films and television. Following her son’s diagnosis, Kathy pursued a career in public health. She has spent nearly 10 years as a Certified Health Education Specialist, addressing the needs of hundreds of families affected by a cancer diagnosis by providing information, community resources, and emotional, social, and educational support.
Helping Others with Hope and Healing
Today, Kathy is the Associate Director of Programs at Cancer Support Community Los Angeles, where she also runs narrative medicine workshops. She previously served as vice president of family support for the Pediatric Brain Tumor Foundation and has worked extensively on behalf of families of children diagnosed with brain tumors.
Working closely with USC’s Narrative Medicine program, part of the focus is healthcare in action through outreach and community partnership.
To that end, Kathy earned a “Visions and Voices Arts in Action” grant to offer workshops at Cancer Support Community Los Angeles. Through the program, Kathy collaborates with USC Keck faculty and students in the Master of Science in Narrative Medicine Program offering a series of online and in-person narrative medicine writing workshops for patients and families served by Cancer Support Community Los Angeles.
Life Imitates Art, Art Inspires Life
Kathy and Christopher co-authored the book The Defining Moment: How Writers and Actors Build Characters (Michael Wiese Productions, March 15, 2022). The book focuses on those moments so pivotal in a character’s formation that they create a distinct boundary of before and after — moments without which the character couldn’t exist, and moments through which characters can transform before our eyes. It also delves into the moments when we are “wounded, damaged or crippled,” and how those wounds are often not visible. In the book, the duo reveals their own family’s life-changing struggles to illustrate when a character is forced to transform.
Humility is one of the pillars of narrative medicine, so it’s no surprise that Kathy describes her work as a screenwriter as, “I had some success.”
What she doesn’t share is that she and her husband, Christopher, co-wrote the screenplay for After the Truth, an award-winning German film that tells the story of Dr. Josef Mengele, the infamous “Angel of Death” in Auschwitz.
They have also written scripts for Disney’s Touchstone Pictures, Paramount Pictures, Mandalay Television Pictures, Fountainbridge Films, and Robert Cort Productions. Christopher recently wrote and directed the film No Time Off For Good Behavior, which is winning rave reviews including: Winner, Best Drama, 2023 Malibu International Film Festival; Nominee, Best Dramatic Short Film, 2023 Burbank International Film Festival; and Winner, Best Women’s Film, 2023 Momöhill Film Fair (Switzerland).
It is Kathy’s own written works that most eloquently speak to the deep understanding and empathy she brings to her practice in narrative medicine. In her article “Grieving lost selves: Throop’s concept of presencing forth of an absence,” Kathy writes:
At her sister’s bedside:
When my sister died, the person I was with her as an adult died too. "“ ”
My sister’s last words were, “Let’s go, boys! Get your shoes on.” Her otherwise innocuous words announced her premature and unwanted departure. She fumbled for something in her hospital bed, seeing and not seeing. I think she couldn’t imagine leaving this world without her children. She searched one last time for those damn shoes but never found them. God, who would her two sons be without her? Who would we be, I wondered. Who would I be in her vast absence?”
When my sister died, the person I was with her as an adult died too. Something of the child in the backseat of the car emerged, searching for a place to exist in relationship to my new adult self, a self now without my sister. Throop’s “self-forgetting” rings true here. He utilizes the term “self-forgetting” to describe the absolute immersion of the self in a caring relationship to such a degree that it “forgot a part of its own existence,” much like a musician who is lost in a song. The self I was before my sister’s birth had been long forgotten, concealed in a lifetime of connectedness to my sister. That solitary self was now revealed again through sorrow and loss. I grieved my sister, and I grieved being a sister to her. A new self needed to emerge, one that had lost her younger sister.
On Peter
Long before my sister’s diagnosis, I had fought a cancer battle alongside another family member, my son Peter. Thirty years have passed but I still see Peter at just five years old, wearing a pair of tattered black cowboy boots as he donned green Teenage Mutant Ninja Turtle pajamas while brandishing a plastic sword. He played every character all at once, as if he knew he had a short time to play – the five fleeting years before the headaches and vomiting and brain surgery put an end to the you-can-do-anything possibilities Peter, and I had imagined. Peter didn’t return from surgery the same adventurous boy who brandished that sword. He suffered physical, cognitive, and behavioral deficits.
The treatment he received to cure his brain cancer compounded those deficits. Peter survived his harrowing treatment. Decades later, he lives every day with uncomplicated joy and simple innocence, yet his numerous deficits worsen year by year. The ordinary dreams I stored up in some metaphysical space for him and for me—dreams of finding lasting friendship, engaging in meaningful work, and sharing life with his one true love—also faded with time. I felt this loss most profoundly when my other children moved out of the house and found meaningful lives of their own, and on that day, we unexpectedly ran into a former elementary-school classmate of Peter’s whose adult physical presence and rich life experience dwarfed Peter’s.
Applying Throop’s concept of “presencing forth of an absence” to Peter’s story translates to my grieving the absence of someone who is still alive. This raises the question then of who is absent. Whom do I grieve? I grieve the little boy with limitless possibilities who should have grown into a man with limitless possibilities. I grieve the mother I was with that boy and the mother I hoped to become as I watched him grow.”
The Mindworks Questionnaire
- How do you stay connected to the narrative community?
- Regularly co-facilitate virtual narrative medicine workshops with Columbia
- Facilitate narrative medicine workshops in the greater Los Angeles area in collaboration with the Narrative Medicine Program at USC
- Facilitate narrative medicine workshops with cancer patients and families at Cancer Support Community Los Angeles in collaboration with faculty and students in the Master of Science in Narrative Medicine program at USC.
- What prompted you to choose your narrative medicine path and tell me more about what you do to merge it with narrative medicine? Narrative medicine helped me make meaning of the disparate pieces of my life: my love for art, my screenwriting career, my son’s brain cancer diagnosis and the great privilege of serving and advocating for other families who suffered like mine. I use my experience in the cancer world to lead narrative medicine workshops with providers in oncology and with cancer patients and their families.
- Are you working on developing any new any narrative projects now? I’m working on a collaborative Arts in Action Grant project (https://artsinaction.usc.edu) with Cancer Support Community Los Angeles and the Narrative Medicine Program at USC to help give voice to the stories of underserved cancer patients.
- How do you integrate narrative medicine into your personal life? One of the most powerful ideas for my personal life comes from Rita Charon when she quotes Henry James speaking of the “great empty cup of attention.” If I can empty myself of preconceptions and be an open vessel to receive the stories of those closest to me, there may be great hope for me to receive the story of the other.
- What advice do you have for Narrative Medicine CPA or master’s students? Columbia provides great training in the narrative medicine practice. Take that with you and be bold in seeking out opportunities for narrative medicine work. Find collaborators to share the work and best practices. Innovate.
- What was your favorite part of the NM program? My favorite part of the NM program was the workshop weekend and community that developed during and after.
- What advice do you have for others looking to pursue a career in narrative practices? Be a life-long learner. No one is an expert. Be willing to come to attention time and time again because the most important story in the room may not be your own. Empty yourself of preconceived notions and be a vessel open to learning, receiving, and affiliating with community. Look for opportunities where you are currently involved. Be creative and figure out ways you can help providers or bring narrative medicine to social services. Volunteer to facilitate or monitor the chat for narrative medicine workshops.
