Living with Cerebral Palsy and Intersectionality

For many years, I uttered the phrase, “I live the impossible.” That was how I told most people about living with Cerebral Palsy, but without really telling them. It was my way of saying, "I'm not supposed to do this, but watch me do it.” In my late teens, I traded in skis on the mountain for a pair of rock shoes. I wanted to know what it was like to literally climb a mountain since I'd been metaphorically climbing them since day one. With much effort, I was able to climb a 400-ft rock face. We're talking a real mountain climb, solid rock, and the great outdoors. How it started – in earlier posts, I established that my balance and my vision aren't the best. From age 7 to 12, I went skiing every other weekend through the Children's Hospital. In my teens, I wanted to try different things. I don't remember exactly how old I was, but I tried snowboarding once because it had been too long since I'd been on a pair of skis. Long enough to feel like starting ove...

In my earlier post, Smells like Bubblegum, Anesthesia and Methadone , I touched on some smell memories that I was encouraged to explore deeper. The smell of memories themselves, the pre-op waiting room/playroom at the Children's Hospital versus the children's play area next to the security guard at the drug treatment center.  How it started – six of my ten surgeries took place at the Children's Hospital. The ones from age 4 to age 7, left an indelible imprint. I'd get all geared up in circus-covered pajamas/hospital gown. I'd have conversations with surgeons and my dad before being whisked away to the pre-op waiting room, which was also a playroom because it was a children's hospital. It's a weird feeling being absolutely terrified about what you know is coming, not knowing when it's going to be your turn, and being given toys to play with and stuff to ride around on, while you wait to go under the knife again and again. I can feel the fear as I write th...

“Can I pray for God to heal your legs?” Is a question I was sincerely asked by a well-meaning college student. I was in a position to be asked questions like that because I spent most of my life in the Church in some way or another. Church gave me hope amidst the struggles, it gave me a space to belong sometimes and sometimes not, it gave me my first career (largely influenced by my Cerebral Palsy), and it gave me a different lens to see the world – where people like me were included in the eyes of God. How it started – I was born into the Church. My parents got “saved” sometime before I was born. The first church I spent time in was some kind of Baptist church in the city. Sometime after that I spent most of my childhood attending an Evangelical Presbyterian Megachurch in the suburbs with members of the paternal side of my family. My existence was considered a miracle from surviving premature birth, being on oxygen in the early years, enduring surgeries at a young age, and learning ho...

Context means everything.  I walk with a limp and you could tip me over like a teapot – my balance is a tricky thing. Seeing how close the obstacles are ups the difficulty level to hard. Shaving most of my head in high school took the level to Legendary (if you know, you know – spelled out on purpose). Humpty Dumpty had a great fall, Humpty Dumpty couldn't see 3D at all.  The surgeries on my skull left some interesting scars that were rarely easily visible until that aforementioned haircut – not my best decision making in high school; probably not my worst either. I might have clipped a curb and flattened a tire the first time I ever drove a car because I couldn't tell where the curb was in relation to the car. For those two things alone, I'm definitely one of the people who wouldn't willingly repeat high school. How it started – One of the additional conditions that came along with being born with Cerebral Palsy was not having depth perception. I've read that it...

What follows is the continuation of, A story of living with CP, of doing everything and more that I was told I would never do, of living through complex trauma, and navigating environments impacted by alcoholism, addiction, religion, and mental health issues. I did some math recently when I thought about how I sometimes share that I had seven surgeries by the age of twelve. That's true, but even more alarming to me is that I had five of those surgeries by the time I turned seven.  In my first four years of life, I formed the early memories of the Children's Hospital pre-op waiting room/playroom – cute hospital gowns don't mitigate fear. I hold the smell memory of bubblegum anesthesia – present with me now. I formed the early memories of the play area and security guard at a drug treatment center – I spent time in this building five days a week for many years. I have the readily available smell memory of methadone because of those visits.  How it started – I had the Craniosy...

In my first post, I laid down an introduction to my life with Cerebral Palsy and the other parts of my lived experience that intersect with the CP. The wider context is important to me because I want to honor the role CP plays in my life every day, I also want to honor my other life shaping experiences, and I want to bring awareness to the whole human being living with a disability.  I was born with Cerebral Palsy. To the best of my knowledge, I have Spastic Diplegia CP. I put it that way because I'm piecing parts of my story together with missing data. I no longer have access to my earliest medical records, which is part of the story, but I've been doing lots of homework over the past few years. How it started – I had other conditions along with the CP, which is not uncommon. I had amblyopia (AKA Lazy Eye) and I've never had depth perception (driving and 3D movies are the biggest casualties of that). I also had surgery twice for Craniosynostosis (my skull didn't develo...

When I talk about living with Cerebral Palsy in person, sometimes I begin with the statement “I've spent over 40 years seeking to be seen, heard, respected, and more. Over the past couple of years, I've made it a goal to learn more about the condition I live with and to use my voice to talk about it. In no way am I an expert, but I have lived with Cerebral Palsy for over 40 years.  Living with CP impacted my entry into this world. Living with CP shaped my childhood along with some other things. Living with CP has impacted my medical journey. Living with CP defined my professional trajectory. Living with CP has been an obstacle that created defiance. Living with CP shapes how I see the world and how I move in it.  How it started, a brain injury before, during or after the birth process. I was born 2 months premature. I've always had other related conditions in addition to the CP. I'll share about those in future posts. I was born 3 lb 11 oz. By all rights, I shouldn'...