There is a saying in the brain injury community: “If you’ve seen one brain injury, you’ve seen one brain injury.”
The premise of this saying is that no two brain injuries are the same, no two recoveries are the same, and no two treatment plans are the same. TBI is a complex and grossly misunderstood injury.
After sustaining a traumatic brain injury from a fall on the ice in February of 2014, I have become an active advocate for the brain injury community. I have witnessed first hand the many ways that TBI is misunderstood, and I have also witnessed the many different personality changes that can result from it.
Depending on where the brain has been injured, survivors can exhibit an array of behavioral and emotional symptoms including anger, rage, sensitivity, apathy, depression, lack of focus, loss of filtering, to name just a few. I have noticed that I myself am much more sensitive, and I am also more aware of the abusive behavior in other, seemingly well-meaning people.
As the administrator of a fairly large Facebook group for those with TBI, I have had my share of struggles in dealing with personal attacks from fellow brain injury survivors. Sometimes they lash out at me in frustration, anger, paranoia, and jealousy.
For the most part I understand that these attacks are their brain injury talking—and not really them, but knowing this certainly doesn’t make it any easier to be on the receiving end of such attacks.
Sometimes I feel that the more visible I become in the brain injury community, the more I am punished by those who simply aren’t able or don’t understand how to control their behavior— and especially their words. It’s a very real challenge, and I know I am not alone in being the brunt of these abusive attacks. Others who also are doing good work tell me that at times they, too, have been treated poorly.
One of the biggest obstacles I have to deal with is related to my book, a collection of my Huffington Post pieces that shared my journey through the first 18 months of my recovery. I am often told I am working to “build an empire,” and trying to make money off of the brain injury community.
Anyone who has ever published a book knows that the money we make from sales is “peanuts.” The income I receive each month usually doesn’t even pay my cellphone bill.
I get it, these people are struggling to make ends meet, and make assumptions that I am rich because I am a published author. They feel that I should be giving the money I earn back to the community … which I am indirectly. Every dollar I make on book sales, and through my GoFundMe page, is used to offset my travel costs for the advocacy work that I am doing across the country.
But the reality is: I am barely making my own ends meet. I have come close to eviction because I couldn’t come up with rent money in time. I have gone hungry for weeks at a time because I couldn’t afford groceries. I have cancelled meetings and appointments because I didn’t have money to put gas in my car to get there. I have had my cellphone turned off on a fairly regular basis because I was late paying my bill. THAT is my reality.
I believe it is often forgotten that I, too, am recovering from my own brain injury.
The reason I promote the heck out of my book is because I know it is helping those who read it—not because I am raking in cash from sales. Regularly I hear from those who have read my book who tell me that the stories saved their life, or helped them understand a loved one who is currently dealing with a brain injury. It’s messages like these that keep me moving forward and keep me from getting too stressed out by the naysayer’s comments and criticisms.
But with that said, the personal attacks still hurt.
I have become very comfortable with the “block” button on Facebook, and do not hesitate to block anyone who is causing me stress. Some are far more relentless in their efforts and will then seek me out on Twitter, then LinkedIn, then my blog, and then email — they will do everything they can to find me online. It’s sometimes scary, and I have at several points considered calling the police to see what my restraining options might be because one never knows if they will one day show up at my front door.
I have to say that even if 100 people send me positive messages and only 3 send me negative, abusive messages, it’s that 3% that speak the loudest. They are relentless at times, and drown out the positive messages that I receive. I also understand that this is partly my own processing (that may or may not have been affected by TBI) and I am taking action to work on overcoming my over-sensitivity.
But through it all, I know that I am doing good by raising awareness of this invisible injury that affects 2.8 million Americans each year.
I have a vibrant, growing community on Facebook with many followers who are eager to help me spread my message. I have made many incredible friends in the brain injury world and wouldn’t trade this journey for anything!
Amy Zellmer is an award-winning author, speaker, and advocate of traumatic brain injury (TBI). She is a frequent contributor to the Huffington Post, and has created a privateFacebook group for survivors and also produces a podcast series. She sits on the Brain Injury Advisory Council (BIAC) through the Brain Injury Association of America’s and is involved with the Minnesota Brain Injury Alliance. She travels the country with her Yorkie, Pixxie, to help raise awareness about this silent and invisible injury that affects over 2.5 million Americans each year.
In November, 2015 she released her first book, “Life With a Traumatic Brain Injury: Finding the Road Back to Normal” which received a silver award at the Midwest Book Awards in May, 2016. Her second book, “Surviving Brain Injury: Stories of Strength and Inspiration”is a collection of stories written by brain injury survivors and caregivers and was released November 2016. for more information:www.facesoftbi.com