Confessions of a Concussed Cyclist: What Do You Need?

March 31, 2019

I need you to trust me when I say “I need to rest”.  Please do not make me feel bad by responding with “you need to get out more!” or “it’ll be good for you”.  Everything I do takes more energy than it used to therefore I require more down-time. Sometimes that rest is for neuro-fatigue and other times it is because I am on overload and desperately need peace and quiet.  

I need you to not judge how I handle living with post-concussion migraines.  Your comments about medications I take do not help me. Your snide remarks about how unhealthy western medicine is, do not make my migraine go away.  I need you to understand that I am doing what I need to do to simply function.

I need you to not make comments about the reduced hours I work.  I feel bad enough as it is that I am no longer a full time special education teacher, I do not need you making me feel worse.  I’ve met with people about returning to work and they actually have cried listening to my story and reading my doctors notes and are shocked that I am trying to return, yet I have friends and family that judge me harshly when I “only” work 4 hours a week.

I need you to respect what I say when I say “I can’t handle this right now”.  I am letting you know that my brain is on overload and cannot handle anything else.  I’m trying to remain calm when you keep pushing because you have not said all you need to say but it only makes it worse for me.

I need you to understand that I do not enjoy cancelling plans last minute but I’m learning to listen to my rattled brain.  When it tells me to rest, I rest. I need you to be okay with that and to not assume I’m avoiding you or that dragging me out of my apartment will make me feel better.  Respect the rest, calm and quiet that my brain now needs.

I need you to let me have emotional days.  My life literally changed in the blink of an eye and at times, the emotions that come with such an event can be hard to handle. I need you to be understanding of that instead of saying to me “you need to let it go”, “it’s been long enough”, or “this is not healthy”.  

I need you to not laugh when I share symptoms of living life with a TBI.  Some of them are embarrassing to me (i.e. stuttering) and some don’t make sense (i.e. my fear factor) but they are all very real. It is helpful to me if you listen to what I say and retain it.  

I need you to not compare my head injury to others you read about online or random people you may know.  No two head injuries are the same.

I need you to be respectful.  My self-esteem is very low right now and my depression is debilitating.  Your judgement does not help me.

I need you to realize that although you cannot see it, the damage done to my brain is quite real.  There is no rule book for how to live with a brain injury, there are no guidelines. I am truly just doing the best I can.  This is the hardest test I have ever been put through.

I need you to treat me the same way you’d wish to be treated if, heaven forbid, you found yourself in a similar position.