Crossing a Line from Ignoring to Having a Voice

“I've found what I've been waiting for, but to get there means crossing a line…I got demons inside me | So I'm faced with a choice | Either try to ignore them | Or I give them a voice” (Crossing a Line, Mike Shinoda). 

The truth is, it's easier for me to talk about intersectionality most of the time than it is to talk about the CP. I've lived with Cerebral Palsy my whole life and I can talk about anything (even football and I don't pay attention to that). Why was it easier to write a three part piece on grief and my dad than it is for me to tell you what it's like to live with CP? Because “to get there means crossing a line.” I have to connect the dots between what you can see, what you can't see, what I haven't wanted you to see, and then hope you care. 

For me, life with Cerebral Palsy goes well beyond the medical journey. It's the names I was called that I can still hear decades later. It's the fights I had to back out of because my will is stronger than my body. It's the things I stopped being welcomed to participate in, like sports, so I rebelled against them. It's the first girlfriend in middle school who “took pity on me,” it's conquering the mountains on my skis, it's going to art school so I didn't have to go to gym, it's having my fatigue invalidated as lazy or a station of life thing, it's having the defiance to get up and do it anyway, it's the wildly inappropriate questions I have been asked about what I can do. 

I've said before that I invite questions, but there's a difference between wanting to know how I function in the world and wondering if I could pass CP on to my offspring. The answer is no, but I shouldn't have to tell you that. CP makes it harder for me to tie my shoes than it hinders my ability to drive – my vision is why I don't drive (see a prior post on that). 

Life with Cerebral Palsy leaves me afraid of ice in the winter and mapping every space I walk through so I don't trip and fall. It means waking up with new aches and pains that weren't there yesterday or are the exact same. It makes mornings hard because I don't just bounce into action. It means making excuses because it takes me the longest to get ready every day and I can't do it faster – I've tried. I remember the time I was able to change, shower, and redress in twenty minutes because it only happened once and was at like 4 pm. Otherwise, it's a good hour to do that. 

Life with CP has meant some people think I'm drunk when I'm sober and I was able to drink more than you because I didn't have to drive home. It's also meant people ask me if I hurt this or that, if I have some other condition that's not CP, it means having to be doubly assertive at times because people second guess me a lot. I've been excluded and had to exclude myself. 

It's hard to talk about the specifics of living with CP sometimes because I don't want you to feel sorry for me. I don't want to come across like a victim. I have a lot of imposter syndrome. But, the hardest part of talking about the real day-to-day of my CP is the possibility that I'll share it and it doesn't help, or worse someone mistakes my vulnerability for weakness. 

CP is why I chose my first career in ministry because I could physically do the job. I'd argue that it was a factor in the end of my ministry career also. I don't know that for a fact but I have certainly felt that. For me, I've often compared myself to the non-disabled person, so to me, “underperformance” in me is because of CP. Whether fact or perception, it's fuel that took me to the top of my second career. 

I think with my body because of CP. I don't always ask myself if I can do something or if I should do something until I'm in the middle of it. Sure, that means on occasion, I'm hanging upside down off the side of a mountain, sometimes that means I flip the alpine slide, sometimes I forget that I also have to make the walk back, sometimes my own two feet are riskier than the patch of ice, sometimes I pick the fight I can't win out of pride, and sometimes I ask out way too many people in high school (okay, this one had nothing to do with CP, but I poke fun at myself when I'm uncomfortable, or so I've heard). 

I spent a lot of years ignoring my CP, how I move with it in the world, and how it makes me feel. Now I'm giving my CP its rightful voice to breathe and exist as the major part of my story that it is and has been. Ignoring it didn't work. For years now, my body has been telling me to pay attention to the CP. I could choose to keep ignoring it, or I could cross that line, and give it a voice.