Confessions of a Concussed Cyclist: “but you look so normal”

December 31, 2017

It’s something we’ve all heard before (“we” being anyone living with something that is invisible to the naked eye): “but you look so normal”.  

A few days ago, someone I have come to admire and respect said those words to me.  “You say you have a head injury…but you look so normal!” My mouth drops open for a second as I form my reply.  Before I can begin speaking he quickly tries to dig himself out of the hole he has realized he is in, by adding “I’ve seen people with head injuries and you don’t look like them”.

For a second my first thought was anger!  Anger that I needed to “defend” myself to him and to justify my claims of a brain injury.  But I quickly turned into education mode. Educate this man, that is already highly educated.  Explain to him what he cannot see.

“While riding my bicycle, I was hit by a SUV on August 19, 2014.  The impact with the vehicle resulted in three traumatic impacts of my brain against my skull, as well as my brain twisting on the spinal stem.  I was quickly diagnosed with a Traumatic Brain Injury.”

He nods and quietly listens as I explain.

“I’ve struggled with post concussion migraines since the day of the accident.  I have some cognitive issues as well.”

“Such as?” he inquires.

“Short term memory issues.  Problems with multitasking. I get over-stimulated very quickly.  My words can fail me, more so when I’m tired…” I let my words hang, letting him know that I’ve cut my list short for the sake of time.

“Okay…I get it.” he says.  

“But I’m really good at hiding it!” I add to which he gives me a big smile and nods.  Now he understands.

And there it is!  There’s why I can get away with not fitting into the mold that he expected.  It costs me all my energy when I hide it, but it allows me to save face…something I still feel the need to do in certain situations.

What is the easiest way to hid it you may ask?  I nod and smile! Talking with a friend and feeling overwhelmed?  Nod and smile! Feeling like your words will fail you the next time you open your mouth?  Nod and smile! Not able to process what is being said to you because the person is talking too fast for your slow processing brain to comprehend?  Nod and smile!

“…but you look so normal” is a reality we survivors must all face.  We don’t walk around wearing signs around our necks with our warning labels: “Be gentle…TBI survivor!”  There are all sorts of levels of a brain injury. I am high functioning. I can live alone, I can take care of myself.  I can use my Special Education training to make accommodations and modifications to my life, all while hiding the turmoil going on inside my head.  There are times I wish I had a jagged scar across my forehead to let others know that something has happened to me. Perhaps this would prompt people to be a bit more gentle when I’m around.

Because I do look “normal” (and I use the term “normal” loosely…what is “normal” anyway?!) I think it’s easy for even those closest to me, to forget the hell that my brain is living in.  If they can forget, I can understand why someone new in my life would struggle with my reality, when they haven’t seen me on bad days. They’ve only seen me when I nod and smile!