Living with Cerebral Palsy and Intersectionality

“The power of love is a curious thing, it makes one man weep, it makes another man sing” (Power of Love, Hewey Lewis and the News).  I've had three or four drivers in life, the first three being love, courage, and creativity. I'm going to use a lot of courage and a little creativity to talk about the former as it relates to living with Cerebral Palsy.  Love is without a doubt my number one driver in life and I don't say that in a cheesey or mushy way, but very seriously. As a human being, I understand that a lot of people see with their eyes first and, whether we want to or not, we assess impressions of people based on what we see.  As a kid growing up with CP, I saw the way people looked at me differently and I worried a lot about how that would influence my relationships with others, especially in the ways of love and attraction. Being told that someone took interest in me out of pity in the seventh grade didn't help that internal anguish.  It's taken me the bette...

I've been “surviving the night just to get through the day” for a long minute now.  That's a line from my poem “Hugs from Strangers.” When I write poems and songs they tell stories, like I'm doing here, but sometimes they tell stories of the things I can't say. Sometimes songs and poems tell my emotional stories. The moments that made me feel something deep.  Like this one that I wrote after reading the medical record of my birth.  33 Weeks       With a flat head and crossed eyes;  The brain bleeds, the lungs gasp, and the heart tries  From the first minute – I shouldn't be alive.  On the eighth day, how did I survive?  Life-threatening and I couldn't even see;  No wonder chaos is where I thrive. Clap your hands to my surprise.  The mirror of your truth and your lies.  Cut me open; ignore my cries.  Mother, dear, we almost died. I long to sit by your side. Father of mine, the jury is out from inside.  33 weeks un...

There was nothing but trees, rocks, and a raging river below. It would take actual blood, sweat, and tears to keep going. Every ounce of strength I had was required. How did I find myself here? What was I thinking? That was inconsequential in the moment. I had to push forward.  It was the last time I'd ever climb a real mountain. Before the descent, every muscle was jello. I was banged up just from the climb. Minor scrapes and wounds were the norm the handful of times I went on the rocks. I needed to make it 400 or so feet to reach the summit. Physically, it's one of the hardest things I've ever done.  On the way back down the mountain, I basically skied the backside of the rock face in my rental rock shoes because I had nothing left in my legs. My lead is the only reason I made it down. I remember the descent better than the climb because I was recycling the thought, “don't let go” all the way up the mountain and all the way back down, but in a very different way.  It ...

I'll never forget that Christmas morning and what I felt inside. There was a certain air about it. The kind of air memories are made of, the kind of air that breathes into your soul, the kind of air that changes your course. That's the kind of Christmas morning this turned out to be. On this Christmas morning, my future would take shape.  This was not just one Christmas morning, but a collection of them. One of the first was when I was around five years old. I got a kids drum set for Christmas. It wasn't just a cool present from my parents who were divorced at this point. It was that, but it was so much more.  That micro kit molded years of memories for me starting with the excitement of that Christmas morning. Followed by years of passion for music. Long before I ever tried to learn guitar, I was on a drum kit. The first songs I wrote were on the drums. But, I'm getting ahead of myself.  My drum kit was center stage at the start and implosion of my first band several y...

I have Spastic Diplegic Cerebral Palsy. “Spastic diplegia/diparesis: Muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. Tight hip and leg muscles cause legs to pull together, turn inward, and cross at the knees (also known as scissoring), making walking difficult” (CDC). What does that look like for me? The spasticity in my left leg is so tense that my right leg has done most of the work for my movement and balance. It's taken a toll after four decades. My right leg though less spastic has endured the most pain. My hips are so tight it's hard to describe. I usually use the snare on a snare drum imagery because of how tight those are, but even that's not really accurate because you can release the snare without major surgery.  I've had a bilateral release of both hamstrings and heel cords on two separate occasions to reduce the spastic tension. My arms are stronger than my legs. My left arm has a fair amount of spasticity, to the ...

I wrote over a hundred songs and I only remembered how to play one of them. That's difficult to fathom. I composed seven albums over the course of twelve years. I'd played hours long sets from memory and I almost forgot it all completely. My musical creativity was preserved in memory that I couldn't reach anymore. My fingers felt like they'd never touched guitar strings. From the echoes of extinction came a familiar sound.  Special K music died twelve years ago and only I have its remanence in archives. Fifteen years ago, I wrote a song from the smoldering ashes of pain, loss, and failure. I was told it wasn't going to be good for me in so many words and I buried it. After that, I started gradually softening the edges and self censoring my music. Then one day, words like a dagger clipped my guitar strings and silenced my pen. The guitar went in its case after “Until it's Gone” was written.  There's a certain irony to that fact. “Until it's Gone” had a li...

I'm staring at a mountain as I write this. Not the mountains I know, but one I’d never seen before. It's very grounding. I need that a lot. Especially in new spaces. While in this location, I spent a lot of time navigating unfamiliar spaces, winding walkways, cobblestone sidewalks (the beautiful treachery), and new people. All of this newness requires lots of mapping and intentionality on my part.  The mountain may be very grounding but the spaces I'm navigating take me out of that grounded state. When it comes to spaces, I don't like unpredictability. When it comes to life, I expect unpredictability. That's a funny conundrum. Comfortable in uncertainty in one context and completely disrupted by it in another context.  A note about cobblestone sidewalks. They're gorgeous, but awful to walk on when you have balance issues. Maybe this is why I don't get excited about historical spaces (most of them are harder to navigate because accessibility wasn't always...