Since 2007 My ability to stand and walk was in increments taken away, till by 2009 standing was an exercise in falling down and walking was a thing other people do. Doctors told me nothing other than stop work, stop anything that involves gross motor movement.
Then my legs developed a life of their own, and my arms and my face muscles and my torso jumped in on the fun. At first I thought it was my Epilepsy playing up but it wasn’t , top specialists has no idea, internists had no idea, basically anyone with an md after their name was clueless(enter mandatory “aren’t they all comment” here)
Then one day I went to a hospital for an MRI that I had to be fully knocked out for, and they twisted my arm while I was under and pinched a nerve. While I was in the ER after having it seen to, the spasms started and a surgical resident commented very off the cuff “how long have you lived with neuro spasticity?” neuro what I asked? Spasticity she replied, and went onto explain that when the brain sends multiple messages to a limb or group of limbs all at once it overloads the nerves and the limb spasms, common in people with spinal cord injury and paralysis caused by neurological disorders spasm uncorolably at will because of injury and denegration to the system caused by the original shock to the system of the original injury or diagnosis.
I told her I had been to the best of the best and they has no idea, she told me she had just finished a two year fellowship in Europe studying neurological disorders affecting spinal cord injury patients, and had studied this for over a year.
So I went to another doctor and told him what she said, and he studied up and explained spasms was something that all para’s and quads live with but neuro spasticity was a more severe form as it effected all the limbs and the torso not just lower limbs.
Isn’t it amazing I can’t make them carry me upright but they can shake, kick, spasm, and even cause full blown seizures of their own choosing anytime they want.
I have built my life around them, at home I sit on a wide sofa or bed surrounded by pillows and when I’m out I know Manhattan like the back of my hand and only frequent places where I’m known and they know I have constant spasms and they look after me.
When you see someone in a wheelchair and their limbs move, no they’re not faking a disability, they’re spasming.
When you see it and you’re Christian, no you can’t lay hands on me and pray or I’ll lay hands on you and make you pray, don’t call 911 on total strangers were disabled not dead, paralyzed not paralytic.
This story will go on forever, or as long as I do but right now the very thing I’m writing about is making itself known and typing is difficult almost impossible.
So I have two choices at the moment, one stop, two throw some dirty clothes in the bath, jump in and be a human spin cycle so ooroo and Is it okay to mix colors with whites?