Imagine being in labor for 36 hours. Hell hath no fury like a woman in labor for that long, right? Seriously, though! But, that’s how it all began. Blood, sweat, tears, and forceps forced me from my warm, happy place and I was finally born. I’m pretty sure the fight was so hard because even my infant brain could already understand that the outside world would be one giant refrigerator – and to this day, I have an absolute aversion to being cold! Luckily, I found another warm, happy place in the arms of my parents, and it was exactly the warmth that I would faithfully return to each time the world got too cold for me to handle.
Everyone knew that ‘something was wrong’ with me from the beginning – they just didn’t know what the actual disability was called or how it would affect me. Cerebral Palsy? Most likely. Yeahhh…that! So, they just went with that, and my parents were advised to stick me in an institution. Yep, one of those places where they throw you in a corner and someone changes your diapers and tosses food at you until you die. Then you’re replaced with some other poor, unfortunate soul, and the process is repeated. They were actually told I would, undoubtedly, be a ‘vegetable’ and have no chance at a normal life.
But my awesome Mama Bear fought for her cub and took me home, instead. I’m sure, at the time, she really wasn’t considering the life-changing battle she and my dad would have to endure. It meant years of chasing doctors and multiple diagnoses. It meant trusting total strangers, needle pokes, endless surgeries, and inconsolable crying. How does someone deal with that? I honestly have no idea. I’m sure if you closely enough, though, you can see their superhero capes!
After years of constant struggle, though, they finally found someone who could tell them what was wrong. I had Tethered Cord Syndrome with a big side of Hydrocephalus. Now, I’ll be the first to admit – when I go to the doctor, as much as I love my current doc, he talks WAY over my head all the time. They all do. Five minutes in, and they seriously sound like Charlie Brown’s parents…Wah wah wah wahhhh….!! To me, it’s like, “Dude, I see your lips moving, but you’re not saying a dang thing! Is that even English?” LOL
So, I honestly can’t tell you all the nitty-gritty details of my own disability. Pathetic, I know. If you’re big into the medical side of it, I invite you to check out more info on Google or you can click here.
All I can really tell you is how it affects me. I mean, I can tell you that the spinal cord and spinal column got attached in a couple of places and had to be released. I can tell you that the nerves in my spine were all knotted into a big ball (that did get untangled surgically), which screwed up the communication between my brain and my legs. I can tell you that the fluid in my brain doesn’t circulate on its own, so I have a tube in there that does it for me. I know that my muscles and bones are naturally deteriorating faster as I get older because of the added stress on them throughout the years. But, beyond that, I just don’t know, and honestly don’t care. Knowing all the terminology and medical hoopla doesn’t change how it affects my daily life – and living as ‘normally’ as possible is the bigger priority for me.
I hope that’s not too disappointing. Usually, when I give people the ‘cliff notes’ version of my medical history, they seem a bit disappointed that I can’t tell them the minute details. But, really, is it all that important? Tethered Cord Syndrome, Hydrocephalus, and a rickety old wheelchair are only very small parts of who I am. We can focus on the trial, or we can focus on the overcoming of it. I intentionally choose the latter.