TBI Life: “You don’t look like you had a head injury…”
The irony of this statement has riddled my life for the past 8.5 years. As frustrating as it is to be judged, I know I am fortunate that I can walk, talk and “look” healthy. How I feel is sometimes an entirely different story.
You don’t understand chronic pain until you live it. My father had severe back pain and growing up, I didn’t get it until I was dealt my own struggle. Since my accident, I feel like I swapped my Rolodex of clients for one of symptoms and it sucks. I don’t think I complain about it anymore (or maybe I do and people are just too kind to say anything?) but generally speaking other than my mother and my husband, no one really asks how I am feeling anymore and I view that as a good thing. Most days.
Living with physical pain has become my new normal and a part of my life, which is why it makes me satisfied that family and friends no longer ask me how I am feeling every day. We have other things to chat about when we are together, and I welcome the distraction from my headaches/migraines/numbness and cognitive deficits. I no longer dwell and wonder, “How am I going to survive this?” because 8 years later, I’m surviving it. I also don’t find my ailments as worrisome as they once were because I am experienced enough in my post concussion symptoms and know it is all normal. I know what I need to do to manage it and I do it. In the early days, it was the focus of my life, as it should be, because I was constantly disturbed by new symptoms and wondered if it was normal and how I should treat it. As time goes on, I try and handle my pain and deficits with grace, but realize society has trouble adapting to them because they aren’t visible. This is the driving force behind my blog and I am judged daily, because I don’t look like I have a broken brain.
There is this article that I’ve shared on Facebook a few times about someone receiving a nasty note for parking in a disabled parking spot. The ignorant author accuses the spoonie of taking a spot away from someone that truly “needed it.” The accusor obviously believes that because this person is physically capable of walking into a store, that they aren’t eligible for accommodating circumstances. When I park my car in public, I am able to get out and walk into a store and I appear functional and able. I am, just at an entirely different capacity than it appears. To someone watching me, I appear normal, however my entire experience in the store is not. My brain requires me to park in the same row at the stores I frequent, to take pictures of where I parked so I can get myself back there, or to make a game out of it with my kids for them to remember where we parked- all compensatory strategies for me to live beyond my head injury. I try and limit my outing to 45 minutes or less because I know a headache will come on quick, and if it turns into a migraine I will suffer the entire way home. I need to make sure I get out of the store before rush hour hits because I don’t drive then, to avoid having a panic attack with that many cars on the road. I stick to my list and try to organize it to mimic the layout of the store, that way my shopping is methodical and I am not wasting energy trying to find items at the top of my list that are located in the back of the store. Finally, when it comes time to pay, my brain is so fatigued from all of the previous activity that I can’t count money accurately and have to pay with my credit card (a compensatory strategy I began practicing instantly after my accident to avoid humiliation). This short 45 minute shopping experience looks easy to someone watching me, but I assure you, it takes every ounce of energy I have and I usually leave the store missing a few items because I’ve hit my limit and need to sacrifice my list to save my energy to drive home. The task of having to find my car amongst an overwhelming crowded parking lot becomes a source of frustration and anxiety, and can cause me confusion- so that disabled parking pass could very well belong to someone like me.
I know I am fortunate to “look” healthy and despite living in pain I am able to walk, talk and live my life. At some point after my accident, I took on the “Grin and bear it,” mentality and it accompanies me every day in my role as a Mom- complete with trips to Target, the grocery story, library, school, playdates. I attempt to do everything my kids need, usually with a lot of laughter over my shortcomings. What challenges me now is when I am in public using an enormous amount of energy to complete an activity that requires zero discomfort for a non-brain injured person and I am treated negatively because society has expected me to act a certain way and I can’t.
I’ve recently stopped relying on my credit card all of the time and when I feel well enough, I try to pay with cash. It used to embarrass me that I couldn’t do this (Could you believe it?? a CPA that can’t count money?!) but time has given me the confidence I need to admit my deficits and the lack of awareness propels me further into sharing my story. As soon as I start to count the money and sense the cashiers impatience and frustration, I explain, “I had a brain injury years ago and some things take me a little longer than it would someone else. I know it looks like I should be able to count money quickly but I struggle with it.” I then get an embarrassed, muttered, “you don’t look like you had a head injury,” and they look at me sheepishly. Instead of getting frustrated, I now smile and hand over the money, thanking them for being patient with me when they are anything but. I hope my confession enlightens them to the invisible battle I fight every day. My mind may be jumbled and disorganized, but you can’t see that. So I’ll grin and bear it, and hopefully they will remember, “Everyone you know is fighting a battle you know nothing about. Be kind. Always.” I know I do.