While several people around me celebrate a different joint, their blunts and papers to Mary Jane… I worry about my ligaments—the joints that I nurse like a concerned parent over a flailing, expressive baby. I delicately balance having Cerebral Palsy with being an expansive outgoing, and very disjointed person. I must consider every hour of every day, making sure that I am NOT stressing my joints out. I have to move but what is too much?
My bones, muscles and I tow a moving line between exercise and over-exertion. I can clean a home. I can push a lawn mover. I can drive as long as I really know where I’m going. And there is fear built in to these joints I’ve got.
Because as I age, the line between enough and too much moves wildly like a Tourette’s patient with spasms included. There are days when I exercise just enough. And conversely, there are days when my joints react in confusion because I got too excited about what I was doing… and my mind won over my body’s lingering, persistent limitations.
So while you guys are smoking your blunts, I’m giving myself tough love about what my joints can and cannot do. You people only have joint problems when you’re old. I’m not old and I’ve had to deal with pain in my joints as a child.
And no I have never needed marijuana to cope with Cerebral Palsy. I know we all are different, and I know some of you guys are going to be angry with me. But I have never used a drug like marijuana to cope with my very permanent disability.
My pain rating varies. If only I could use that celebrated J.D. Power rating system to give everyone a comfortable star rating of what happens in my daily life with this developmental problem that I didn’t ask for, you guys would get it.
But I’ve lived with these “creative” muscle joint problems for over three decades and I cannot always predict what my own muscles are going to do. I rely on faith, balance, and lots of delicate therapy, and several conversations with Jesus, GOD and myself. Sometimes, all these things aren’t enough.
Some people use joints to cope. I use my joints to linger, to traipse, to frolic, to jog, to amble, to press, to move along. I can’t kick. I used to move a ball around on grass when I was a little tike. These were sparse moments when I did some edited form of physical education. And there was this one time when the spherical shape of the ball became nuisance enough to knock me down. It’s funny how joints are space between things. We use drugs to space out, but I’ve never been truly separated from my Cerebral Palsy. I’ve tried many things to bridge the gap.
I’ve done the performance anxiety thing, they self-motivation thing, the pray it away-thing, the fool yourself and act like it isn’t there-thing. The watch others so you don’t watch yourself-thing. But there was always a space for people to conclude: Poor him, he’s like that dis-reputable establishment of a person that makes a great stew, but can’t tie his shoes.
I don’t have to pretend to be a ghost, or apparition. My disability spaced me out. There is always a space between the disabled and other people. The irony is that I’ve fought hard to find my space, my point of connection, or my point of location.
And as an adult I’m more out of joint with many of the people I’m supposed to find the space between. So books are my connection. Words are my heroes. Because in effort to find location, and the space between start and finish…
I’ve existed in a Uncle-tom establishment that says without a word: even the way you experience your Cerebral Palsy is too much for us.
Sometimes I can’t meet at the meeting place of people like me because my routes and roads are just too confusing.
As a man with Cerebral Palsy, I’ve discovered that by definition my personality is maybe more of semi-conductor than I once believed. See, when people see disability…
They tend to see a blind person. We are blind as bats. We’re looped in with the autistic, as adults quartered off on a separate planet.
But a joint is joining together, not a separation. I’ve realized recently that the social study of myself isn’t the same as the psycology of myself. Words and writing can’t fill what electrified, motivated people bring to the psyche of my disabled life.
My joints made me an other.. but my friends, and my people made me a somebody. Who are my people? Any person that helps me take a break from being a person with CP! Nothing matches the people who make you feel accepted, loved, appreciated, and supported.
And if a joint supports movement, I want to move toward the one or ONES that makes me know the electricity that makes life more than just a collection of days, tasks, and accomplishments spread over a nomadic journey.
I found one person that allows me to move at a stride that’s mine. No, we’re not dating. But like the universe, this person helps my joints do that semi-conducting — still banging, still blazing toward self-ACTUAL, still reaching for SKY.
I don’t understand how cannibus turns us into thrashing cannibals. But if I can accept arthritis before I’m 70, shouldn’t these ignorant nutcases who blame me for just existing, accept that I didn’t choose where my humanity links with the universe collective?