In 2016, I was a champion ultrarunner, yet I was given 3 months to live with a chordoma tumor wrapped around my brainstem. Our children were 10 & 12. We chose to be really open with our kids and our friends (while keeping some details private) even before we had a treatment plan. We learned to face the fears head on. And we learned how to talk with our children about living and dying. I also had to learn how to ask for help and how to raise money. When I did ask, I was shocked by how many of our friends thanked US.
With their urging, I started the Brave over Perfect blog on www.susierinehart.com, which led to a TEDx talk, and a book deal. My memoir, Fierce Joy, came out in 2019. It’s about facing the unknown, plus how we talked to our children, engaged our community, and raised funds. It also talks about healing, rediscovering yourself, and becoming a warrior in a new way. In each section of the book I offer a series of takeaways―lessons learned when life forced me to slow down and step back. I mention the book here in case it could be helpful to you or someone you love.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.