Growing up spastic
All those doctors, therapists, and specialists who have told me how well I am doing with the cerebral palsy are very sweet, and they know what to look for.
But people who don't know what they're looking at sometimes get this very interesting expression on their faces and in their eyes. They can tell something is not quite right, and are often very surprised when I explain that I was born with brain damage that led to mild cerebral palsy. There is that old oft-repeated phrase "Oh, but you don't look disabled!" Or, occasionally, "Wow, your CP looks nothing like what I usually see!"
And sometimes I get tired of this or maybe slightly annoyed. I know I shouldn't. Everyone says that having mild cerebral palsy is a good thing compared to severe, and I know that. But I do wonder if people even consider the deep, deep, deep mental, psychological, emotional, neurological, and developmental scars CP has caused. The monsters may be very small, but the claws have been digging and ripping very intensely all my life.
I often have to explain myself in a simple, laughing, "Hey, I'm just stupid and I forget things" sort of way, especially when I am scolded for making a mistake that I should have known not to do. I often have to remind people that my left side really cannot handle certain tasks, and that I must rest, and that I can regularly feel the broken, dead neuromuscular connections as I do the most basic of tasks. Brushing my teeth or hair with my left hand. Picking up coins with my left hand. Picking up, well, anything with my left hand.
My left side sometimes feels ghostly. It's not numb, I just forget it's there. Oh, I will use it, it will be quite active... but I am rarely aware. It took the first ten years of my life to understand simple things like walking, running, skipping, jumping, dancing, even crawling, as well as swinging my arms when I walked. I still can't tie shoes. That doesn't matter anyway.
It is so hard for me to reach out to others with mild spastic ataxic left side hemiplegic hemiparetic cerebral palsy with hypertonia, because I don't personally know anyone with that specific combination. I try to join forums and communities to discuss all the associated physical, mental and neurological disorders left in the wake of cerebral palsy's rampage - sensory processing disorder, epilepsy, synesthesia, dysphasia, poor eyesight, muscle and tissue disorders, fibromyalgia, nerve pain, joint pain, respiratory problems, growth problems, ADHD, depression, light bladder leakage, failure to thrive, hypersensitivity, emotional and mood disorders. The list could go on.
In my childhood, no one thought to question what would happen when I grew up, because they were focusing too much on just exercising my body and teaching me mental exercises. And sometimes I wonder what would have happened if someone had decided to monitor my progression into adulthood.
My random disability thought for the day, I guess.
But people who don't know what they're looking at sometimes get this very interesting expression on their faces and in their eyes. They can tell something is not quite right, and are often very surprised when I explain that I was born with brain damage that led to mild cerebral palsy. There is that old oft-repeated phrase "Oh, but you don't look disabled!" Or, occasionally, "Wow, your CP looks nothing like what I usually see!"
And sometimes I get tired of this or maybe slightly annoyed. I know I shouldn't. Everyone says that having mild cerebral palsy is a good thing compared to severe, and I know that. But I do wonder if people even consider the deep, deep, deep mental, psychological, emotional, neurological, and developmental scars CP has caused. The monsters may be very small, but the claws have been digging and ripping very intensely all my life.
I often have to explain myself in a simple, laughing, "Hey, I'm just stupid and I forget things" sort of way, especially when I am scolded for making a mistake that I should have known not to do. I often have to remind people that my left side really cannot handle certain tasks, and that I must rest, and that I can regularly feel the broken, dead neuromuscular connections as I do the most basic of tasks. Brushing my teeth or hair with my left hand. Picking up coins with my left hand. Picking up, well, anything with my left hand.
My left side sometimes feels ghostly. It's not numb, I just forget it's there. Oh, I will use it, it will be quite active... but I am rarely aware. It took the first ten years of my life to understand simple things like walking, running, skipping, jumping, dancing, even crawling, as well as swinging my arms when I walked. I still can't tie shoes. That doesn't matter anyway.
It is so hard for me to reach out to others with mild spastic ataxic left side hemiplegic hemiparetic cerebral palsy with hypertonia, because I don't personally know anyone with that specific combination. I try to join forums and communities to discuss all the associated physical, mental and neurological disorders left in the wake of cerebral palsy's rampage - sensory processing disorder, epilepsy, synesthesia, dysphasia, poor eyesight, muscle and tissue disorders, fibromyalgia, nerve pain, joint pain, respiratory problems, growth problems, ADHD, depression, light bladder leakage, failure to thrive, hypersensitivity, emotional and mood disorders. The list could go on.
In my childhood, no one thought to question what would happen when I grew up, because they were focusing too much on just exercising my body and teaching me mental exercises. And sometimes I wonder what would have happened if someone had decided to monitor my progression into adulthood.
My random disability thought for the day, I guess.