My Story – Living With Post Concussion Brain Injury

I often say that my life really began the day my first son was born. And, as much as that is true, my life as I knew it later ended on July 2, 2016, the day I hit my head. The day I sustained my second concussion. In the late afternoon of a bright, surprisingly hot beach day at the Oregon coast amidst waving kites, my two sandy boys, and the promise of a never-ending summer day, I turned too quickly and slammed into a large driftwood log sticking out from the fort we built.

It was cartoonish in ways, I literally saw stars and clutched my head and fell to the ground the same way athletes do on the field. Within an instant, I wobbled into a strange time space warp where voices were both near and far, words were on the tip of my tongue but somehow could not be formed, and the depth of pain felt like a never ending pit.

I could feel my husband’s arms around me. Heard my boys asking “is Mom ok?” Distant reassurance that everything was fine. I simply bonked my head. Give her a second, she’ll be fine.

And for a bit, I believed it. Just let me lay here. Let me close my eyes. Let me drift off into this blackness that was both frightening and peaceful.

But I knew. I’d been here before. Not quite as far into this black hole, but this was familiar. Only 9 months prior, I’d also hit my head. In an equally lame situation, playing catch in our backyard and somehow not seeing the play structure as I ran for the ball.

That concussion took weeks to recover from. And there I was again.

But maybe not? Who is this unlucky? How can it be so bad? Please no.

And, yet it was.

I call it my cliff. There is an edge in my brain, with one side having coherence and words and life and meaning and then off that cliff, there is a seemingly endless blackness of incoherence, jumbled words, erased time, imbalance, intense nausea, despair, ice pick sharp pain, and a strange sense of floating.  I completely fell off the damned cliff.

Another concussion. Two in one year. Even just a little bit of awareness or watching televised sports tells you that can’t be good.

Part of me wants to recount those minutes, hours, days, weeks, months, years that I’ve lost. Maybe because outlining them gives shape to that time, like I’m somehow getting it back. But I’m not. It’s gone. And truthfully, how many words can you ascribe to something you barely recall?

Instead of focusing on those lonely dark times when I was certain I may not wake up, pleading with God not to let my boys remember me like this, those times when I’d find myself crumpled on the floor/bathroom/grass/grocery store/park bench because I just couldn’t do it – I’m moving forward, finally.

Though I admit, a specific kind of hope slipped away as the timeframe continued to shift, “most people recover from a concussion in a few days. Sometimes up to six weeks. Well, it can take several months. Usually, by the first year, your brain has healed. After that? Well…….“

For the first year, every day was a struggle. Taking a shower felt like an accomplishment. I missed out on so much. I saved every last bits of myself to love my boys and had nothing else left. Years two and three were much more functional, though I lived in a fog that never lifted. My focus was on getting through the day. I spent most of my time just trying to appear normal to most folks. Like, “I’m smiling and nodding though I’m still processing what you said two minutes ago.”  I often debated making a shirt that read, “I have traumatic brain injury, ok?” Just so people wouldn’t think I was intoxicated/airheaded/uncaring.

It’s a journey. I’m not better. I’m not who I used to be. The cliff is still there, and sometimes I still fall off it. I quit my position of teaching high school special education. I haven’t ridden a bike since right before my first concussion. I don’t drive farther than about 10 miles. I forget a lot of things. You’ll rarely find me in a store. Stairs, games, chatting, exercising, and simple things like throwing a ball, are not so easy anymore.

At this point, I’ve come to accept that part of me is gone. I’d like to think that hopefully my most annoying and selfish traits were erased, but alas, not so. While I’ve got a stronger sense of hope and resilience, I grieve for the part of me that was sharp, quick-witted, and even smarter than I gave myself credit for.  

It’s true. I’m slower. Words don’t come as easily. I often create a huge mess of my sentences and say the most bizarre things like “honey, can you please vaccumm the grass” or “boys go get your puzzles for bed!”  I lose every day words like coffee maker, pillows, underwear, or cooler and replace them with a made up word or string of adjectives (you know, that cold box thing for food?)  We can laugh about it most times, though it sometimes makes me sad in a long lost sort of way.

But you know, the human brain is such an amazing thing. For all the wit I lost (who am I kidding, I probably was never very funny to begin with) and the IQ points that disappeared, I have found a renewed strength and confidence.

Like venturing to PTA meetings or talking to new people or starting this blog. It’s like, what the hell have I got to lose? Sure, the other PTA moms probably think I’m ditzy, but at least I’m not in the fetal position here on the library floor.  And who cares that those college guys laughed at me, thinking I was drunk when really I was just struggling up the steps to the game?

I’m here, ain’t I?

And that has really been my phrase, my self encouragement, my motto to look to; I’m here.

This place is not where I’d ever expected to be in a million years (I could’ve written my life story with dramatic turn of events and brain injury would never have made an appearance), but I’m embracing it and so incredibly grateful that I have this time.

I know full well it could’ve been much worse. I’m focusing on being more mindful and living with intention. I’m here to love my boys & husband, be the mom I wanted to be, try new things (who knew I had a green thumb after all?), do what I can (walking the neighborhood route every day for 3 years is actually much more juicy than you might expect), give back (just don’t expect me to drive), and be a friend again.

So here I am. This is me. This is my story.