“Are you sure Cerebral Palsy is the only diagnosis you have?”
Suddenly, the snow globe version of my world was vigorously shaken and a confetti of racing thoughts were bombarding my brain. As a result of the falls of all falls, I was meeting with T.S. Park, the world’s lead doctor on Selective Dorsal Rhiztomy (SDR). As I approached turning 50, after 10 minutes of meeting with me, he pondered what else was going on with me.
Okay, well, you may be the expert in SDR, but I know this body inside and out and I’m the expert in that, I thought but kept my inner snippy girl at bay. Cerebral Palsy, and only Cerebral Palsy, is what this body does.
If we don’t stake a claim for what we know about our disability, what will others tell us or try to do to us?
After another five minutes, Dr. Park declared I was not a candidate for SDR surgery. The reason? Wait for it…
I wasn’t spastic enough.
And yes, it’s true SDR improves gross motor functioning and I do have basically no spasticity in my legs, I had to hold up my continuously moving fingers to Dr. Park. Not spastic enough, huh?
There’s no doubt Dr. Park does fine work in the world. Two of my friends have gained incredible mobility from the surgery he performed on them.
It wasn’t in the cards for me, though. At the time I saw Dr. Park I was less than a year away from the big 5-0, the absolute age cutoff for SDR. I think that was a big factor in his decision to say no.
Bigger yet, was I walked out of St. Louis Children’s Hospital feeling like the universe gave a profound reminder of why I’m here in this body.
I am meant to always have a profound gait, fall pretty regularly, express through accented speech, spasm (fingers only!), and most of all, carry a deep, deep sense of knowing that it’s all part of how I am to live this glorious life.
Whether you receive 100 surgeries to help with your functioning and mobility or none, my wish for you in this month of March as we celebrate Cerebral Palsy and Developmental Disabilities awareness, is you celebrate who you are, exactly as you are right now.
There may – or may not – be a “fix” to save you from falls or your mobility, but there’s no fixes for flaws that don’t exist.
See you live Thursday at 4pm (ET) to chat about it!