Confessions of a Concussed Cyclist: how to help a TBI survivor

January 14, 2021

I initially started writing these Confessions with one purpose in mind; if the driver that hit me, ever decided to look me up, she’d see what she did.  She’d read about how her actions affected every aspect of my life.  I continued to write my Confessions because I found it was a great way for me to vent and to process all that I was going through.  And lastly, writing was a way for me to inform those around me.  

Today’s Confession is an informational one; how to help a TBI survivor. This one is tricky for many people because it involves a skill that many people lack. How do you help a TBI survivor? It’s pretty simple…listen! Listen to their fears and frustrations. Listen to their story and their symptoms. Actually listen to them! Don’t impart your “wisdom” on them (but my friend with a migraine, put a paper towel soaked in vinegar on their forehead and poof! their migraine was gone! [true story]). Don’t insist what they are going through isn’t legitimate (but I read online that… [I could insert hundreds of endings to that line!]). Don’t tell them why they hurt or where they hurt (it’s their body, they know how they feel). Don’t tell them enough time has passed, they should be over the trauma, the pain, the adjustment period, etc. (all things I’ve been told). Just listen. I know this is a hard skill for many because as a collective, we no longer listen to hear, we listen to respond. TBI survivors are the one living this life. Not your friend that once had a headache. Not the keyboard warrior posting on google about an article they read while at the dentist office regarding brain injuries. Ask questions and LISTEN to the reply. To be completely honest with you, not many people actually ask me questions and listen to what I have to say. Many never ask questions. Some may ask questions but they’ve already formed the answer in their head so they don’t actually listen to what my reply is. And still others may ask, they may even listen, yet they don’t apply their new found knowledge. Years ago, I remember my nephew Nicholas (he was probably 8 or 9 at the time) warning me not to look to my right. I did it anyway only to see that he was trying to protect me from a flashing light (for those that don’t already know this, flashing lights and my rattled brain create seizure type activity). I was in awe of this young person, asking questions, LISTENING to my reply and then applying his knowledge. He was way ahead of most people in my life. I have dozens more stories about how young Nicholas used his knowledge to look out for me, but I’ll save those stories for another time.

There is a picture going around regarding TBI survivors that says something along the lines of “just because I struggle to talk doesn’t mean I have nothing to say”.  I think it’s too easy for those around us to shrug us off.  It can be hard to put into words what we’re going through, but personally, I’d always rather that you ask and I struggle to explain than you not asking at all.  I’d rather you hear what I’m going through, from me, because as we TBI survivors know, no two brain injuries are the same.  

I often feel that my TBI symptoms are my problem to deal with and mine alone.  I don’t expect others to look out for me yet at the same time, when someone knows a trigger for me and they carry on, ignoring the trigger and what it will do to me, I get upset.  I’ve been spoiled by my Mom warning me before she turns lights off and on (another informative piece for you: I get very dizzy when lights change on me without me having a heads up so I can close my eyes).  I’ve been spoiled by my friend Dave telling me to step outside before he creates a bunch of noise at the shop (the slightest increase in noise will send my migraine pain through the roof).  These are two examples of people that asked questions, LISTENED, and applied.  Although I don’t feel it’s your responsibility to look out for me, I do appreciate those that take the time to protect me and my already rattled, painful, brain.

Talking is not as easy for me as it once was; it’s exhausting. So if I take the time to explain something to you, I truly wish you’d listen to what I’m saying. I’m not explaining my brain injury because I like to hear myself talk. I’m not explaining it because I have nothing else to talk about. I’m trying to give you insight into my world.

For those that know me well, they know that one of my favorite (and often used) expressions is “get your head out of your a__”! *insert snicker here*  I’ve had many, many, MANY situations when I wanted to scream that at someone because 1. They were not LISTENING to what I had to say or 2. They perhaps listened to me but they didn’t hear my words.   

Whether there is a TBI survivor in your life or not, take a step back and ask yourself if you actually listen to understand or if you only listen to respond.  I can’t speak for everyone but this TBI survivor would be happier if a few more people listened to understand.