Ridin’: 20 Years of Cerebral Palsy Awareness (or Midori Sours and a Winter Dance)

“My music's so loud, I'm swangin’” (Chamillionaire, “Ridin'”), maybe it was the winter dance in my first months of college, maybe it was the Midori Sours I got into, maybe it was the fact that my music was actually loud, and maybe it's just the way I move with Cerebral Palsy. I wasn't bringing intentional awareness to my Cerebral Palsy twenty years ago when Cerebral Palsy Awareness Month and Day (March 25) was coming into existence. I was two months into college, shooting pool, and drinking Midori Sours with the ladies. 

I still had a little bit of sweetness in me back then. I was a long way from the days of whiskey neat. I was busy enjoying the freedom of college, even if it was an Evangelical Christian University where I had to sign behavioral contracts aimed at purity. Here's the thing about that time in my life, I wasn't talking about my Cerebral Palsy, I was mostly talking about Jesus, college life, songwriting, and what to do on Friday night. 

When Cerebral Palsy Awareness Month was launching twenty years ago, I was taking road trips to Kansas with friends to watch basketball tournaments and sling-shotting Twinkies at my roommates. I was moving to the pop hits of the day at my first college dance. I was doing my very modified slow dance with the ladies from across the hall of the dorm. I was doing photo shoots for the school talent show, with a mohawk, shades, and a wallet chain. I was more interested in being a rockstar than telling my story. 

I spent more time back then talking about how Jesus changed my life than I did talking about Cerebral Palsy. My internalized ableism was still too deep. I didn't talk about complex trauma either. I was still deeply codependent for my father. I went home pretty much every weekend to watch like five hours of wrestling and hangout with my dad. He was kind of upset that I left home and decided to live on campus. The university was only twenty minutes from home. 

When I wasn't doing that I was doing things like going to pool halls with three ladies and drinking Midori Sours because I hadn't really drank before that winter. In my internalized ableism, I wanted to downplay my CP for the ladies because it was bad enough that I didn't drive. “When all you got to keep is strong, move along” (All-American Rejects, “Move Along”). 

Everyone knew I had CP but I didn't want it to be front and center. I was enjoying my first semester of college, trying to make friends, prepare for a career in ministry, and still leave time for my dad. Everything was new and hopeful then. I didn't even have tattoos until later that year. Like John Mayer, I was “waiting on the world to change.”

“If they knew how misery loved me” (Fall Out Boy, “Dance, Dance”). Maybe I could have written my song Split Second Freedom about some childhood trauma sooner, I could have talked about what it's like for me to live with Cerebral Palsy, I could have sooner understood the codependent relationship I had with my dad. If only I'd been willing to share those truths, instead, it's more like I kept it all my “Dirty Little Secret” but my actual regret is lacking the confidence not to compartmentalize.

The writing was on the wall for all of this, I didn't drink alcohol until I was nearly 23 because of my dad's addiction and the purity influences of Evangelical Christian culture. That's why I started out with Midori Sours because I didn't have a taste for it. It's amazing to look back twenty years to reflect on Cerebral Palsy Awareness Month. I may not have been talking about CP yet but I was having a life-changing year, getting out of my father's home, making amazing friends, starting to write a lot of music, planning to have a career that I once thought was an impossibility. 

As I would have told you back then, I lived the impossible. Life with Cerebral Palsy has touched every phase of my life in different ways. Now is the season that I'm bringing awareness to it for Cerebral Palsy Awareness Month, Day, and beyond. The thing about my CP experience is that it's uniquely mine and while others with CP relate to my experience and I relate to theirs, each of us experiences it differently, and manages the experience in a contextually driven way. I had a very different story to tell you today but context dictated otherwise. It was more than I could bear. Then I was reminded about Cerebral Palsy Awareness Month by the Cerebral Palsy Foundation, I looked at photos from twenty years ago in March, and wrote what you've read here

 (yes, that means I have pictures from the dance, the pool hall, the road trip, and the talent show photo shoot). Sometimes the story you want to tell or expect to tell has to wait until you're ready. When talking about disability and complex trauma, it might flow freely or take the better part of twenty years to sit in certain spaces. “I need your grace to remind me to find my own” (Snow Patrol, “Chasing Cars”).