21,970 views | Susie Rinehart • TEDxBoulder
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Susie Rinehart is a TEDx speaker, champion ultrarunner, a mom, and a brainstem
tumor survivor. She began writing her blog from her hospital bed and quickly became an inspiration for those facing adversity. Susie now co-runs The Brave Over Perfect Project, coaching people & organizations to proactively pursue risk and overcome perfectionism.
She lives with her husband and children in Boulder, CO. Her book Fierce Joy: Choosing Brave over Perfect to Find My True Voice is available for pre-order now.
To connect with Susie, watch her TEDx Talk or visit her website.
She was good at striving for goals and checking off achievements. But she was struggling with feelings of depression and anxiety, and no one knew. Susie now co-runs The Brave over Perfect Project, coaching people and organizations to proactively pursue risk and overcome perfectionism. She is also a champion of girls education globally; a portion of the proceeds from the sale of Fierce Joy go to Maia: Her Infinite Impact. She lives with
her husband and children in Boulder, CO, and dreams of starting a family band.
Women have never been more successful.
They have also never suffered more from anxiety and depression.
Before the diagnosis of a rare tumor wrapped around Susie Rinehart’s brainstem and
vocal cords, she won several acclaimed ultramarathons at the Masters level. She was good at striving for goals and checking off achievements. Then she found out she was going to die young and without a voice. She also wrote down how she wanted to move forward:
“I choose joy over fear and bravery over perfection.” This is her uplifting story of losing,
then finding her voice in all its power.
God how much I love these people who go through some trauma and instead of just surviving, reach out and tell their story that helps someone. Highly underrated TED talk.. Such a simple but beautiful message. I treasure your words and will also endeavour to incorporate them into my life. Brave is so much better than perfect. What a moving and inspirational speech!! KUDOS to your ‘NEVER-GIVE UP’ spirit !! xo
I would say the most important thing a person should do here on earth, is have a saving relationship with Jesus. Life on earth goes by quickly, soon the grim reaper comes by for
a visit. If Jesus is your savior, no problem, eternal life awaits you…We take nothing with
us when we die except what we do for Jesus and His Dad.
Treasures in heaven never run out…This lady is a true inspiration. And much can be learned from her…But don’t forget developing your relation with Jesus in your life…..
If you need some teaching on Jesus stuff, the bible teaching site, teaching faith.com
has a series titled, ‘change of mind’..30+ free streaming videos, can greatly help you
as they did me.
Susie Rinehart is planning two upcoming trips to her cancer doctor in Boston.
She needs regular scans and doctor visits to monitor a rare bone cancer that has
spread from her skull to her spine. Rinehart doesn’t have a specialist near her home
outside Denver who can treat her. These visits were done virtually during the pandemic.
She will travel without her husband to save money, but that presents another problem:
If she gets bad news, she’ll handle it alone.
“It’s stressful enough to have a rare cancer, and this just adds to the stress,” the 51-year-old said. Rinehart’s oncologist, Dr. Shannon MacDonald, said telemedicine regulation enforcement seems to be more aggressive now than it was before the pandemic, when video visits were still emerging. “It just seems so dated,” said MacDonald, who recently
co-wrote a piece about the issue in The New England Journal of Medicine.
To state medical boards, the patient’s location during a telemedicine visit is where
the appointment takes place. One of MacDonald’s hospitals, Massachusetts General,
requires doctors to be licensed in the patient’s state for virtual visits.
It also wants those visits restricted to New England and Florida, where many patients spend the winter, said Dr. Lee Schwamm, a vice president for the Mass General Brigham health system.
That doesn’t help doctors like MacDonald, who see patients from around the country.
Cleveland Clinic also draws a lot of patients from out of state. Neurosurgeon Dr. Peter Rasmussen worries about how some will handle upcoming travel, especially because winter can bring icy weather. A fall “literally could be life ending” for someone with a condition like Parkinson’s disease who has trouble walking, he said.
Survivorship
After four years of treatments and recoveries, Susie’s tumor is inactive, and she is thriving. But like many people who live through and beyond chordoma, she didn’t think of herself as a survivor.
“At first, I thought survivors meant that you’d been cured.
I thought I had to correct people who called me a survivor.”
It took time and reflection for Susie to develop a relationship with the idea of survivorship. She now sees her chordoma as a chronic disease, something she lives with and manages every year. Instead of letting it define her, she has allowed it to become one of many parts of who she is.
“Even when I was running ultramarathons and winning races against other ultrarunners, I never considered myself a ‘true’ ultrarunner. I still had that outsider-insider feeling. That’s how it’s been with chordoma. I AM a survivor. And I do see myself that way now. But I am not ONLY a survivor. And that’s important too.”
The time of diagnosis is not the only time to seek resources.
Survivorship is its own kind of journey, filled with new experiences. Having a reliable place to turn when tackling the physical, emotional, spiritual, and practical challenges commonly experienced after treatment is important. That’s why the Chordoma Foundation launched the Chordoma Survivorship Initiative, aimed at providing patients and families with the information, support, and resources needed to get care and live well both during and after treatment.
Connections
Susie is now a trained life coach, and her practice focuses on helping people thrive
in times of transition. She knows first-hand the need to embrace and address stress and uncertainty while also not wanting to be defined by it. And she has experienced the power of connecting with people who get the ‘whole you’ — the part living in crisis or illness and also the part parenting school-age kids or navigating a career change.
“I remember sitting in the waiting room of the proton beam radiation center at Massachusetts General Hospital day after day, and finally getting brave enough to start talking to the people around me. For so long, I had wanted to think of myself as different. I had wanted to be among the well, not the sick. But when I finally opened myself up,
I built lasting friendships with people who truly got it. People who could talk about craniotomies and home-schooling in the same breath, and who saw me as Susie, not as some person with cancer.”
Susie has since extended those connections to the Foundation.
Her care team – Dr. Liebsch, Dr. McDonald, and Dr. Cote – all encouraged her not to be afraid to reach out. And when she did, it felt different. She found information, resources, and people she could relate to. And now, she’s becoming one of those resources herself.
About the Chordoma Survivorship Initiative
Dealing with quality of life issues that have serious impacts on the well-being of patients and their family members is a common experience in our chordoma community. The goal of the Chordoma Survivorship Initiative is to provide you with information, support, and resources to help you get the care and assistance you need to live well during and after treatment. Existing resources include those listed below, with more to come in near future
As the initiative expands, your input will be critical to ensuring it meets your needs and the needs of our community as a whole. In order to learn more from you, we’ve developed a survey tailored to our community, focusing on chordoma survivorship and quality of life.
Susie Rinehart is an award-winning author, champion ultra-runner, life coach, activist
and mother of two young children. On June 30, 2016, she was diagnosed with a rare, aggressive tumor on her brainstem. Her doctor told her, “Without surgery, you have less than five months to live.” After multiple complicated surgeries, she has recovered but there were big risks. That was over three years ago.
Susie’s incredible journey to find her voice and a new kind of bravery after facing death allows her to share important lessons about pain and suffering, finding and holding onto joy, and the importance of slowing down to experience the sweetness of the moment.
You can listen to a full conversation with Susie Rinehart by clicking ‘play’ below, or on the following podcast platforms: FR Ep 107: Reclaiming Your Joy with Susie Rinehart – Feminine Roadmap
Susie Rinehart’s Fierce Joy
A reflection about authenticity and what gets in the way — perfectionism,
people-pleasing, fear — and the power of showing up as our whole, true selves.
“I decided to choose joy over fear, and bravery over perfect.”
– Susie Rinehart, chordoma patient
Susie Rinehart has always been strong. She’s a mom, a leadership coach, an international girls’ empowerment advocate, and an ultrarunner. But beneath the veneer of confidence and success, she struggled with anxiety and depression, feelings she neither shared nor confronted until a diagnosis of chordoma forced her to reconsider how she wanted to live.
In June of 2016, two weeks after winning an ultramarathon in the rocky mountains, Susie was diagnosed with a cervical chordoma. She was told that without surgery, she had less than five months to live and that even with surgery, the road ahead would be painful and complicated. At that moment, her entire life’s focus shifted from “What do I need to achieve?” to “How do I want to live?”
Through 36 hours of surgery, two craniotomies, a neck fusion, and weeks of daily radiation therapy, she thought about this question, always with her husband and two children at the front of her mind.
Having lost her voice after the initial surgeries, Susie learned that the best way to gain it back was to sit still, do less, and listen more. So she slowed down and opened her ears and her mind to the world around her in a way she hadn’t before.
She listened to her doctors, she listened to her fellow patients, and, most of all, she listened to her family. Her children, she learned, were even more deliciously creative, insightful, and brave than she realized, filled with the strength and wildness that comes with being young and unencumbered by the voices and expectations of the world.
She began writing them letters filled with the stories and lessons of her life —
what she had learned about love, control, work, success, and joy. As she wrote, however, she realized there were sometimes gaps between the advice she gave and the decisions she herself had made, which led to an awakening.
“I stopped telling my daughter and son what to do and started trying to lead by example. I dared myself to listen to my joy and ask how I felt about the world rather than how the world felt about me.”
Susie’s thoughts became letters, and then blogs, and then a book, Fierce Joy, published
in 2019. In it, she writes about authenticity and what gets in the way — perfectionism, people-pleasing, fear — and the power of showing up as our whole, true selves. Order Fierce Joy at susierinehart.com/fierce-joy/
INTRODUCING YOU TO FIERCE JOY TODAY.
This guide explores the causes of anxious perfectionism, crippling fear,
and anxiety in regards to the impossible expectations society forces upon women.
It explains how listeners can find their own voice and teaches them how to ask for
help in a society that teaches us to “suffer in silence”. By unraveling that journey
for listeners, Fierce Joy reveals how to embrace imperfection and also overcome
expectations, so that listeners can live a life that is full, unique, and real.
Fierce Joy, is a #1 Amazon New Release. It is everything I know about bravery as a woman, a partner, a parent, a leader, an athlete, an activist, and a brainstem tumor survivor. Reviewers say it’s fast-paced and beautiful and funny.
I say, Don’t forget that it’s a love story!
It’s about showing up as our whole selves in life and at work and what gets in the way, namely perfectionism. It’s about love and death and living life to its fullest. It’s about choosing joy over fear and bravery over perfect.
It’s about how our striving to do things the “right” way is making it impossible for us to be real or make real progress. It’s about how Fear has become a main character in our lives, and a dangerous obstacle to change. Joy is our birthright, but we have to be fierce to trust our true self rather than believe the know-it-all voice of Fear.
This story is for you. It’s bold and beat-up and fierce and human, just like you and me.
Three years ago, I found myself in the dark, raging against a diagnosis that meant I would die young and without a voice. I asked for your help. You got me through it. You gave me the courage to start writing about my experiences. You helped me decide how I wanted to move forwards in the dark: I choose joy over fear and bravery over perfect.
Then Mango Press wanted to publish it. And that scared me. Until I realized this could help someone get through the dark. When someone you know is in a hard place, I want you to give them this book. I want them to feel as loved and as held as you made me feel.
Fierce Joy: Choosing Brave over Perfect to Find my True Voice is a memoir about how the world runs on fear. But we don’t have to anymore. Fierce Joy | A Memoir by Susie Caldwell Rinehart | Available for Preorder Now! (susierinehart.com)
Telemedicine became easier during COVID-19. Now it’s reversing. – CBS News
Susie Rinehart (@susierinehart) • Instagram photos and videos