Tears in Heaven on the Highway to Hell

I recently ran across a picture of my dad and I playing acoustic guitars when I was in college almost twenty years ago. It was a curious thing as far as the stories I tell here. My dad is unquestionably the reason I started playing music with the drums at age four and later the guitar at age twelve. My dad was not a patient teacher. It didn’t matter that my chord hand was the most impacted by my CP. It hurts to make standard chords because the fingers on that hand just don’t bend that way. It’s why I learned how to play the guitar with shape chords, which probably limits what I can do, but it lends to the blues sound I have, which was also my dad’s influence. But, among the curious things in this picture is that we were playing together. 

By the time of this photo, I was in college and writing a lot of songs of my own. The odds favor that this picture was of my dad playing along to one of my songs. It was also a time where I was the most free I’d been ever. I didn’t live at home. This was either a visit or a holiday. It was in a short pocket of years where the life I had and the life I was preparing for overlapped. My parents were alive, my family was intact, I had no idea what codependence was, and my weekly church activity outpaced the last three years combined. I was in another world. 

As for CP, it was there, it’s always been there, but it was in the background to the other contexts I highlight here. At this season of my life, music and ministry were what consumed most of my time. I’d never spoken to a group about my life with CP at that point. I might have rattled off my surgery statistics to that point or that I had CP. I didn’t know what I know now about CP. I didn’t have the knowledge to call out ableism or the awareness to see my own internalized ableism. I wanted to build a new chapter of my life without the struggles, without the poverty constraints, without the disability. I felt like it made me unattractive and I probably cared more about that form of acceptance than any other at the time.   

I’ve gone through many seasons with CP and much of the time it was not the center of my story. At the time of the picture described above, I was more concerned with the health of my parents. My mom was a recovering alcoholic turned active addict and I didn’t have a good relationship there. I was worried about my dad’s health and the tensions between him and my sister. I was still very much my dad’s codependent two decades ago. My first three years of college I went home to spend Saturdays with my dad almost without fail. Then I’d hit the pub with my college buddies afterwards. Sundays were consumed with church and youth ministry.

A couple of years before this, I volunteered to supervise the teens in the pool on a trip with the youth group because they didn’t want to call it a day and the older adults were too tired. It was in the simple acts of chaperoning activities and helping prepare youth group lessons that my pursuit of a youth ministry career was born. I was in my twenties, old enough to be an adult, but young enough to relate to the teens. I also was willing to have difficult conversations, I still am. The difference then was I didn’t worry about it. It was natural. I thought, I can do this, it’s not too physically demanding and I network enough that it doesn’t matter that I can’t drive. My inability to drive is where my CP made its presence known. To clarify, I can drive, I just can’t see to drive, so it’s not safe, but I’ve done it out of necessity. 

So when I look at a picture of my dad and I playing music from my college days, it tells a different story than the one I live today. Today, I take care of my mental health, I take care of my physical health, and I’m more self-aware. I recognize that life can and does change in an instant. In less than twenty years, the entire context of my life changed. My parents are gone, my family is not intact, I left the Church completely, I tend to complex trauma daily, I support my CP needs, and I have chosen to stop being silent about the ups, the downs, and the struggles. Disability in context sometimes looks like forgetting to remember that you have needs and learning to advocate for them.