by Amy Zellmer
Photo by Audrey Nicole Photography
The past few months have flown by while we have been living in a pandemic. I found that after the first two months in lockdown, we all seemed to have adapted to our “new normal” of living in a world of quarantine and chaos.
Those of us who have been living with a brain injury for any amount of time adapted to the isolation a bit easier than the rest of the world; however, it was still stressful — as it was a different kind of isolation. It’s different to self-isolate on your own terms rather than being told you have to stay home because of the pandemic.
But we are masters of change, as we have had to learn to adapt and reinvent ourselves a time or two during our recovery from a brain injury. While we don’t like change any more than the next person, we have a sort of resilience that helps us ebb and flow.
Technology has given us the ability to connect with one another in a way that was once impossible. Using tech, we are able to keep connected and informed from all over the world. With the click of a mouse we can surf the web for information and resources.
While the internet can be overwhelming, especially if you have visual or processing problems, a vast wealth of information is available to us unlike ever before.
I have spent the past five years providing resources to help other survivors, caregivers, and loved ones find the proper treatments sooner, rather than later. It took me two-and-a-half years to find Functional Neurology, which was life changing. I want others to have the opportunity to find providers who actually know how to help, without wasting time and money visiting doctors who tell them things like “There’s nothing we can do,” “You just have to give it more time,” or “It’s all in your head; I think you’re just depressed.”
I am sure many of you are nodding your head right now because you have heard those phrases. It’s not understandable how doctors with “neuro” in their name sometimes don’t seem to have a basic understanding of concussions and brain injuries.
During this strange and stressful time I made the decision to deliver more content to my community who were craving information (or perhaps, a distraction).
AMY’S TBI TRIBE
Shortly after I published my first viral article on Huffington Post in 2015, I created Amy’s TBI Tribe on Facebook. It is a private group that has grown to 10,000 members made up of survivors, caregivers, loved ones, and professionals.
Some of the original members of the group have become my real-life friends, and many others have developed friendships among themselves outside of the group. It has been so rewarding watching the group grow into a community where members feel safe to ask questions and share resources.
While there may be an occasional ‘bad apple” in the group, I am quick to remove bullies, antagonists, trolls, and those who may just not be able to “filter” their words and actions in an online group setting. The group may not be everyone’s cup of tea, and that’s ok . . . it’s why I have created multiple outlets to get information to survivors.
I started the “Faces of TBI” podcast series in 2015, about 18 months after my traumatic brain injury. I had been podcasting in my “previous” life, since about 2008, so it was a skill I already had (and didn’t “lose” after my TBI).
I began with a handful of guests who were my new friends in the brain injury world. I wasn’t at all consistent with producing them, but it was a start. Quickly I began noticing the download numbers grow and knew that I was creating a needed resource for the TBI community.
My guests have included survivors, authors, doctors, professional athletes, caregivers, and everything in between. With over 160 recorded episodes, there are hours of listening for your road trip or commuting pleasure.
Throughout the pandemic, I’ve seen my download numbers skyrocket. I took it as a cue from my listeners to increase my podcast production from once a week to two or three times a week.
*subscribe on your favorite streaming platorm, or listen at www.facesoftbi.com/podcast-series
In 2017 I began TBI TV on YouTube as another way to deliver content to our community. I realized that while some survivors prefer reading, and others prefer audio, still others prefer video.
TBI TV is designed to be very short videos (I shoot for under 10 minutes) about a specific symptom or topic that I continually see come up in our group. In addition to the video, users can turn on closed-captioning (CC) to help them interpret the content in real time.
*subscribe to my channel at www.youtube.com/facesoftbi
In January 2019 I began a two-year campaign in an effort to raise awareness about this invisible injury that affects over 3.5 million Americans each year.
I have traveled the country photographing survivors and sharing bullet points of their stories on social media to show that brain injury can happen to anyone, anywhere, anytime and it doesn’t discriminate based on sex, age, ethnicity, or income status.
While the pandemic may have thrown a wrench into my 2020 travel plans, I will reschedule events and extend the campaign another year to reach as many people as possible.
*learn more at www.facesoftbi.com/notinvisible
You already know I created The Brain Health Magazine! In 2019 I awoke one morning with the idea to start a magazine — I had absolutely no idea what I was doing, but knew I would figure it out!
I surrounded myself with talented people who are able to help me make each and every issue of this magazine a success. While print subscriptions are currently only available in the US, the digital version is available anywhere there is internet access!!
*subscribe at www.thebrainhealthmagazine.com/subscribe
When the pandemic hit I noticed a lot of anxiety and stress in my FB group and realized many people were missing human interaction and their monthly support group meetings. I decided to take matters into my own hands and created a series of Zoom meetups . . . an online video meeting.
The first meetup had over 100 members online. With Zoom I have the ability to put people into smaller breakout rooms so they can chat more easily with each other. I had amazing feedback about how much everyone enjoyed it, so I did a few more and hope to continue them even after things go back to “normal.”
Because the Zoom meetups are so successful, I wanted to try BINGO via Zoom.
With over 50 members on each session, we had a fantastic time!! In BINGO I read TBI trivia questions. The answers are on attendees’ virtual BINGO cards. Winners receive prizes that I supply and ship to them.
It’s a lot of fun for everyone, including me. I was even invited to host another group’s BINGO when they learned about my version of virtual TBI BINGO!
A big thank you to Integrated Brain Centers — because of their generous sponsorship, I am able to bring you these free resources. We’ll get through this pandemic together, learn a lot, and have maybe even have some fun.
Amy Zellmer is an award winning author, keynote speaker, and TBI survivor and advocate. She is Editor-in-chief of The Brain Health Magazine, and hosts the Faces of TBI podcast series, as well as TBI TV on YouTube.