Survivor Story: My Brain Injured Friends with Alexandra and Beate

Making Headway

Two brain injured friends who were able to support each other through their recoveries and then start a podcast...WAIT, WHAT?!?!? We thought that was our thing but were so happy to learn that there are others using their friendships, conversations, and experiences with brain injury to help others! Today we talked with My Brain Injured Friends, Alexandra and Beate about their survivor stories and lessons learned. We quickly became friends! Take a listen, we guarantee they’ll feel like your friends too.

In this episode:

• My Brain Injured Friends (podcast)
• Alexandra’s story: hemorrhagic stroke survivor due to AVM
• Beate’s story: ischemic stroke survivor
• Neuropsych testing
• Dealing with the hard stuff
• Will you ever get better? When will you be 100%?
• Dealing with religion and relationships post brain injury
• If you just xxx, your xxxx will go away. Praying, hoping, and wishing for a different circumstance. Why would God do this?
• Therapy
• Being flexible
• “If God can love you wherever you are, you can love yourself wherever you are. Praying hard for a miracle? Maybe the miracle is what you are going through. Maybe it’s not wishing it away. Maybe you are in this spot to learn something monumental” (33:10)
• “You get to define why your injury happened, you are the one who gets to see how it changed your life.” As life goes on your perspective changes and the list of lessons that come from it grows longer (33:50)
• “I am what I am right now” (35:14)
• Recovery is a lifelong process, version 2.0 of me
• Friendships may change and some relationships need to be cut loose
• Podcast life
• Starting the podcasts gave rise to community and addressed feelings of loneliness. We realized we aren’t alone!
• Opportunities to share with others who totally get it. When talking with other survivors you don’t have to hold back or protect non-injured people’s feelings.
• Revisiting the injury frequently can be intensely emotional
• Recognizing the trauma without getting stuck in it
• Reprocessing
• “I own the brain injury, the brain injury doesn’t own me. The podcast is a way to pay it forward. [The injury] doesn’t tell my story, I tell my story.” (46:37)
• It’s easy to think there isn’t a brain injury community since brain injury is invisible. The pandemic has pushed us to do more social media, video chat, and make online connections with others in the community. Yay!
• Has taught us about our communication styles
• Yoga Girl podcast, the art of listening
• What surprised you the most about your brain injury?
• Cognitive fatigue and speech therapy for thinking therapy
• How easy it is to take movement for granted. The brain-body connection
• The amount of information you process visually
• Neuro-optometry: for anyone with visual deficits post-injury. They will teach you how to live and compensate for your deficit.
• Having to limit how much you schedule into a day
• Learning your limits and drawing boundaries
• Learning how to say “no”

Links to any resources mentioned:

• My Brain Injured Friends (podcast)
• Bounce Back: Reclaim Your Life after a Concussion By Vanessa Woodburn
• Yoga Girl podcast
• Neuro-Optometric Rehabilitation Association to find a neuro optometrist

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Visit the Making Headway Podcast website to learn more about Eryn and Mariah and our journey to podcasting.

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