Our stories matter: 6 books from the chordoma community

The chordoma community boasts several gifted authors. While their tales differ, they all echo a singular message: our stories are powerful tools for inspiration, healing, and connection.

Edward Lowe wrote "Fighting Chordoma: A Cancer with No Known Cause and No Known Cure" in response to the scarce resources he found after his diagnosis in 1992. "If I can help people who don’t know about chordoma understand it better, that's what I want to do," Edward says. He’s driven by a desire to help others navigate their chordoma journey, and encourages patients to advocate for themselves and never give up.

Edward Lowe with his book, Fighting Chordoma

Allison Zellers, diagnosed at only 13 years old in 2013, wrote "The Girl with Dreams: A True Story of Coming of Age with Cancer." Her book aims to give caregivers and loved ones a glimpse into the emotional whirlwind faced by patients. Writing helped Allison bridge the gap between the trauma of her cancer diagnosis and her desire to lead a normal life. "I tried to go right back to life after treatment; I tried to make my cancer-self and my normal-self the same thing. The book helped me integrate it all, to mesh the versions of myself together," she says. She believes that sharing personal experiences can normalize the complexity of the journey: both good and bad.

Allison Zellers signing her book, The Girl with Dreams

Susie Rinehart's "Fierce Joy" emerged after her 2016 cervical chordoma diagnosis. Initially, she wrote letters to her children as a way to process the curveball life threw at her. But soon she recognized the broader audience who could benefit from her words. She says, "When my doctors told me I may lose my voice, I realized I didn't really know what I was using my voice for. The writing process helped me to understand myself, to unearth my voice, and to grasp the significance of my voice in the world." Her writing also served as catharsis: "It was actually quite positive to have time every day to think about this powerful thing happening to me, to feel the feelings. It allowed me to move through it and come out feeling grateful: to focus forward,” she says.

Susie Rinehart's book, Fierce Joy

Susie’s book also catalyzed a lasting connection between her and fellow chordoma patient and author Susan Hall, who reached out to Susie to discuss writing. The pair developed a meaningful friendship rooted in shared experiences and a common mission to inspire others through their words.

In Susan Hall’s case, "Decide Happy" came to fruition after her sacral chordoma diagnosis in 2016. It’s a practical guide that emphasizes the power of perception to shape our experiences during hardships. “Life happens for us, not to us,” she says. “It's what we decide to do with our hard times that makes the difference." Susan believes in using adversity as fuel for growth and inspiring joy even in challenging times. “Cancer is not who I am. It's not my identity,” she says. “Yet I would not be who I am now, I could not have written this book, and I would not be on this fantastic path if I had not had my experience with chordoma."

Susan Hall speaking about her book, Decide Happy, at our 2022 Chordoma Community Conference

Like Susie and Susan, author Todd Balf took up journaling during his recovery from a 2014 lumbar chordoma diagnosis, which paved the way for his book, “Complications” — a shift from his usual sports and adventure genres. "After surgery, I had mentioned to a friend that I felt like I didn't have a voice anymore. They read my book and told me they were glad I got my voice back,” Todd says. "I thought I was a very different person after going through the surgeries. In writing, I found that my identity was not different; my circumstances were."

One inspiring part of Todd's writing journey was his decision to record the audiobook after suffering a stroke that impaired his ability to speak. "It was a really big challenge. I did the opening chapter and the last chapter — it was a big deal, a risk, a hurdle. I overcame that limitation — a limitation I thought I had," Todd says.

Todd Balf's book, Complications

Finally, while many within the chordoma community choose to share personal reflections, some are driven to create as a tribute to loved ones. This desire to immortalize memories and bring comfort to others is exemplified by Melanie and Jon Barker-Wright in "Drew, Moo and Bunny, Too,” a heartfelt children's story they developed in partnership with award-winning author and poet Owen Sheers. The book was created in memory of their son Drew, whom they lost to chordoma at a young age. The beautifully illustrated tale takes young readers on a magical adventure with Drew and his best friends as they fly together, sharing in the rare wonders of our world. A portion of the proceeds benefits chordoma research, and The Drew Barker-Wright Charity will send a free copy to newly diagnosed pediatric chordoma patients in the UK upon request.

The Barker-Wright's collaboration with Owen Sheers: Drew, Moo and Bunny, Too

You’re invited to consider the impact of your own story and the difference it could make in others’ lives. "Don't worry so much about getting it right, just get it down — start small," Susie Rinehart advises. Submissions for our Uncommon Story series are always open, and we’d love to feature your experiences in your own words as you illuminate a path forward for others.