Cerebral palsy is a disorder of movement, muscle
tone or posture that is caused by an insult to the immature, developing brain,
most often before birth.
Once upon a time, when I was 10 years old, myself and a group of neighbor
kids were getting ready to set up a rather large game of bike tag. A simple (on
the surface anyway) game that combined elements of tag, hide and seek, war, and
riding our bikes entirely too far away from our parents and/or guardians.
There were nine of us, my younger brother was there. And as the summer sun shown
down on us, our bunch was trying to figure out how to split teams with an odd
number of boys.
My friend Ron, the oldest (who would later be the first of us at 15 to have
sex with a girl allegedly, and then advise us that it was “So good he was going
to try and do it again”), suggested the following; “Hey, I know, let’s have a
handicapped team?”
My little brother, only seven years old and not knowing any better, shouted
to the other boys, “Oh hey, David is handicapped!”
My face must’ve resembled the shade between a summer tomato and freshly
ripened strawberry. Even for the humid Ohio day, I was now sweating guiltily. Quickly,
I tried to cover, “Umm, he means I don’t mind playing on the smaller team,
‘cause I know we’ll kick your ass!”
At ten years old being different isn’t a statement. It doesn’t signify out-of-the-box thinking,
being a free spirit, or maturity. It is a frightening concept, one to be
avoided at all costs. Or so I thought.
Signs and symptoms appear during infancy or
preschool years. In general, cerebral palsy causes impaired movement associated
with exaggerated reflexes, floppiness or rigidity of the limbs and trunk,
abnormal posture, involuntary movements, unsteadiness of walking, or some
combination of these.
I had been diagnosed with mild CP about a year
or so after birth. To look at me, this meant very little: My arm had only the
slightest involuntary curvature, and my hand (when open) showed a bit of an odd
splay within my pinky, ring and middle fingers. If I concentrated, these two
items were nearly non-existent. My right leg was even less impacted. Plus even
at that age I was adept enough to know most people aren’t paying that much
attention.
About a year after the bike tag incident, I was in the backyard of another
friend’s house. Fritz had a Mom who seemed to have a lot of boyfriends. Her
current one was apparently trying to make a good impression, so he spent the
time and effort to build her son a tree house.
In the backyard, Fritz, Tristan and I stood marveling at the ingenuity, and
mystery of this impenetrable fortress.
Tristan, by the way, was the first kid to ever hit me besides my brother
(though this would be in the not-so-far-away future…and no he wasn’t aware of
my CP even then, so try not to hate him). He was also a bit of a bully and by
all accounts more popular then I would be throughout my public school career.
With ease, Tristan scaled the wonky looking slats, hammered to the trunk of the
tree that made up the ladder, and in seconds was looking down on Fritz and I
from inside the tree house.
“C’mon Fritz, get yer ass up here.” It wasn’t an invitation it was a command.
A command Fritz obeyed; after all it was his tree house.
There I was, alone on the ground.
While I was confident in my leg strength, I knew that I would likely not be
able to support my weight (Can you say husky pants?) with only my left arm.
“C’mon Dave (hated-and still hate- being called that). Get up here
already.” Fritz’s invitation was filled with wonder and excitement.
Tristan’s was less friendly. “Get up here fatty we’re not gonna wait around
all day.”
There in the grass, I hesitated trying to formulate an excuse. Seconds
passed, they grew to minutes as my mind mulled over the possibility. Should I try, and fail, then what would I
say? What if I fell?
“What’s the matter you chicken?” Tristan elbowed Fritz in the shoulder.
“Look he’s scared of heights.” Chuckles followed from both boys.
But I’ll give Tristan credit, it was a brilliant idea. “Yes,” I replied
calmly, “Scared of heights. I can’t go up there… and that’s why.”
As the story goes, 90% of the greenery that surrounded the tree house was
poison ivy. The mom’s boyfriend, Fritz, and Tristan ended up covered in those
rosy blisters. I, however, was spared.
People with cerebral palsy may have reduced range
of motion at various joints of their bodies due to muscle stiffness.
To pass gym class freshman year, it is
required that one must run a mile in no more than 8 minutes. For situations
like these my parents understood how difficult it could be, not physically, but
socially to undertake such an effort. I was able to meekly present Coach Hunter
with a doctor’s note saying “Nah nah nah na na na, I don’t have to run”.
However, when it came time for the big “exam” I was at the line and took
off anyway. Due more to my youthful exuberance for nacho cheese Doritos, and
less to my CP I wasn’t able to make the 8 minute mark, but I tried it regardless,
finishing (but still passing, thanks to my trusty note) with a 9:30 pace.
Movement and coordination problems associated with
cerebral palsy may include: variations in muscle tone, stiff muscles and exaggerated
reflexes (spasticity), stiff muscles with normal reflexes (rigidity), lack of
muscle coordination (ataxia), tremors or involuntary movements.
In my mid twenties I found
myself in 24 Hour Fitness just outside Los Angeles. It was nearly closing time (some
aren’t really open 24 hours ya know), so the place was practically empty. An
overzealous guy in a tank top and Zubaz pants (this was around 2004 for clarity
on the Zubaz reference) hollered towards me, “Hey bro can you spot me?”
I looked up, and saw him positioned
on the bench press, with what might as well have been a ton of iron on each side
of the bar. I laughed to myself, “Sorry man,
I have cerebral palsy in my right arm. And I don’t feel like I know you well enough
to ride next to you in the ambulance.”
The name of that man was Brad Pitt.
Just kidding, but he did kind of look like him. In Zubaz pants that is.
The effect of cerebral palsy on functional
abilities varies greatly. Some people are able to walk while others aren't able
to walk. Some people show normal to near normal intellectual function, but
others may have intellectual disabilities.
All in all, to look at me I’m a pretty normal human being. I have a damn good
job, pay my taxes, and regularly piss off my girlfriend. Sadly though, I’ll never
know what it feels like to play classical piano. Of course, I don’t like that crap
so it never much bothered me.
I can’t say that I’m through experiencing awkward situations regarding my
CP. Confidently, I can say I’ve learned more about myself, and others because
of, or maybe even in spite of it. Some may even wonder how I deal with the odd
looks, out of line remarks, and whatever else comes your way.
You just learn to live with it, and hope other people do too.
References:
(Note: Italicized portions indicated previously
published material)
1)
Diseases
and Conditions - Cerebral palsy;http://www.mayoclinic.org/diseases-conditions/cerebral-palsy/basics/definition/CON-20030502
2014 Mayo Foundation for Medical Education and Research, Retrieved July 15th, 2014
