Episode 20: Survivor Story: Turning Injury into Advocacy with Amy Zellmer
Faces of TBI, Huffington Post, Brain Health Magazine, author of multiple books, brain behind the scene of many advocacy events...what do all these things have in common, Amy Zellmer! Amy used her experience as a concussion survivor to build community, share resources, and advocate for policy to benefit brain injury survivors across the country. If you’ve wondered how you can get more involved, listen here to get some ideas of where to go!
Topics covered:
Amy’s Injury: a fall on the ice that led to concussion
Helpful treatments: chiropractor, yoga, functional neurology
Vision issues: nystagmus, trouble focusing
Amy feels neurologists tend to focus more on managing long term neurologic diseases rather than brain injury
Amy’s injury taught her that there are resources available but they were hard to find. This spurred her on to advocacy and education with a focus on making resources more readily available to all.
Medical advances and technology had the unintended consequences of pulling medical doctors from the bedside doing thorough physical exams to an over reliance on imaging
“You know your body best, don't ever let a doctor, friend or loved one tell you that that is not possible or can’t happen” (19:30)
Amy’s Journey to Brain Injury Leader
Her goal has been to build community, share resources, and advocate. Every 9 seconds someone in the US has a brain injury and they don’t know what to do or where to go.
First Huffington Post article
Facebook group: Amy’s TBI Tribe
Author: Life with a Traumatic Brain Injury: Finding the Road Back to Normal by Amy Zellmer, a compilation of her articles early on; helps with understanding what it is like to have a brain injury and validates experience
Second book came after she started getting better: Embracing the Journey: Moving Forward After Brain Injury by Amy Zellmer
Podcast: Faces of TBI: features survivor and caregiver stories,
Brain Injury Awareness Day in Washington D.C.
Advice to others who want to help with advocacy and policy
Don’t recreate the wheel
Connect with your local brain injury alliance or brain injury association
Reach out to Brain Injury Association of America
Know your own limitations and where you are in your recovery
Take baby steps. Maybe the first thing you do is write down your story and share it; be a guest on a podcast. You don’t have to do everything to have a ripple effect.
Be mindful of your energy reserves
Be ok with your limitations. Learn how to understand your energy and how much you have to give so you don’t crash
Continue to be mindful
You are a part of the brain injury community no matter where you are on the road of recovery
Poor experiences with brain injury resources may cause you to try to start from scratch. Don’t recreate the wheel, join it and make it better. MAny state alliances and associations only have 1 or 2 employees--have grace and understanding.
Advocacy work takes a lot of energy and you have to be ready to take it on
Don’t compare your recovery to somebody else’s
Imposter Syndrome: just because you are in a better place than someone else doesn’t mean you don’t have a voice or that your injury isn’t “worthy” of speaking out about. Join the community, you may be the voice and have the ability that someone else needs but doesn’t have
March 16th, 2021: Join the free event “Not Invisible” a Virtual Brain Injury Awareness Day
March 22nd, 2021: launch of season 2 of Concussion Discussions video series, free event to help you find your way through the murky waters of recovery
Links to any resources mentioned:
Life with a Traumatic Brain Injury: Finding the Road Back to Normal by Amy Zellmer
Embracing the Journey: Moving Forward After Brain Injury by Amy Zellmer
“Not Invisible” a Virtual Brain Injury Awareness Day
Concussion Discussions video series
Connect with Amy:
Faces of TBI page on Facebook
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