Confessions of a Concussed Cyclist: But you don’t…

April 14, 2021

I’ve heard it from day one…but you don’t LOOK like you have a brain injury.  But you don’t ACT like you have a brain injury.  But you don’t SOUND like you have a brain injury. And from day one it has confused me…how should I LOOK?  How should I ACT?  How should I SOUND?  Do people think that every person with a TBI is in a vegetative state?  That every person is sitting in a corner, drooling?  I truly want to know because I’ve never been able to make sense of it.  

Before you say to someone “but you don’t…” consider for just a second what it is costing that person to not sound, not look, or not act like they have a brain injury.  To act as though they are not struggling.  I have said from the beginning, if there was an award for acting okay when you’re not, I’m pretty certain I’d be in the top 5 contenders. It takes a lot out of me to function “normally”, to act, to sound, to look like I’m perfectly fine and perfectly healthy.  I know at this point many (or most) of you are thinking “then don’t!” but I’ll tell you it’s not that easy.  When I’m at work and my brain is ready to explode, I can’t just let the TBI symptoms fly and hope that customers will understand my sudden shift.  It doesn’t work that way.  There are certain people I can fall apart in front of and they will understand but there is not a single person I’ve let see me at my worst.  Not one. 

I pretend I’m fine, I pretend my TBI is not kicking my ass, but never doubt for a second that I AM PRETENDING.  Everything about this life is difficult.  I can’t pick which days, which times, which moments I’ll be able to function through.  Some days, some times, some moments are easier than others, but they are all hard. And it’s a hard that cannot be put into words.  It’s a hard that no one will understand until they walk the TBI path (and honestly, I hope none of you ever have to).   I hope none of you ever learn just how hard it is.  

I get upset when people say to me “but you don’t…”.  I also get upset when non-TBI people say to me “oh yeah…me too!” You may have your own struggles but until you have a brain injury, you’ll never fully understand my battle. I would NEVER say to a person battling cancer “oh yeah…me too!” Not me too…I may empathize with parts of their struggles, but I will never fully understand it.  Don’t minimize what a person is going through.  Don’t down-play it. Don’t assume you know.  I’ve written over sixty Confessions (insert wide-eyed emoji) and I still haven’t told you everything I go through.  I still haven’t fully put into words just how unimaginably hard it is living with a traumatic brain injury. 

Until you’ve walked in my shoes; until you’ve tried functioning in my rattled brain, please don’t ever question why I do what I do.  Don’t tell me to “stop pretending you’re okay when you’re not”.  You cannot imagine how difficult this life is and how hard it is to navigate.  You may not know what to look for to tell if I’m struggling, but a very small group of people do and they never tell me “but you don’t..”