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I was two years old when Mom and Dad learned that I had cerebral
palsy. We lived in a small, two-bedroom mobile home in South
Beloit, Illinois just a couple of miles south of the Wisconsin state
line.
After the diagnosis of cerebral palsy was made, I
went overnight from being a kid who was just a little slow to a kid
whose whole life was regimented around every type of therapy
imaginable. Day after day, week after week, month after month,
and year after year, I did whatever it took to try to be just as
normal as the next kid. Speech therapy, physical therapy,
occupational therapy—I did it all.
Nothing ever came easy to me, no matter how
simple the job looked. Most people cannot imagine the time that
I needed to do the simplest tasks. Just to put on a pair of
socks took ten minutes! Each movement had to be carefully
planned ahead of time. Before I could even think about pulling a
sock up around my ankle, it first had to go over my toes, down my
foot, and around my heel—a relatively simple task for most folks but
nearly insurmountable for me. I had to figure out not only
where each of my fingers went in order to pull the sock on but also
where best to sit to keep from falling over. It sometimes seemed
as though all I had to do was breathe, and I would lose my balance.
Getting dressed took at least half an hour, and that was after Mom had
set me on the couch, handed me my clothes, and pulled my pants up
around my knees.
I wore leg braces underneath my pants, and they
were the ugliest things you ever saw. Each brace was permanently
attached to a shoe and extended all the way up the length of my leg.
They came with two leather straps; one buckled at the top of my legs,
and the other fastened just below my knees. They were designed
with locks that, when engaged, prevented my legs from bending. I
hated those braces, especially when they were locked. They were
heavy and uncomfortable and made a clanging sound whenever my knees
knocked together. I looked a little like a poster child for the
March of Dimes and walked like the Tin Man in The Wizard of Oz.
Now, you might think that with all the problems I
had getting dressed, the least Mom could do would be to tie my
shoelaces for me. She tied them all right, but only after I had
tied square knots several times while trying to make a bow.
Sometimes my brother, Bill, tied the knot for me. But can you
imagine the frustration of having your younger brother do in ten
seconds what you can’t do in five minutes? I was thankful for
his help, but I was also embarrassed to be forced to accept that kind
of assistance from a brother two years younger than myself. It
seems to me that I should have been the one helping him with things
instead of the other way around. I was so glad when they started
putting Velcro on tennis shoes. If only they had done so thirty
years ago! It would have saved me a lot of trouble, not to
mention time and frustration.
Have you ever tried eating Jell-O with chopsticks
while roller-skating down a gravel road? That’s kind of what
it’s like for me to eat an entire meal without making a mess. I
love to eat. Getting the food from the plate to my mouth, that’s
the tricky part. They say that practice makes perfect, and
although I’ve not totally perfected my eating skills, I have improved
with age. But when I was a kid, meals were a major production,
and making a mess at the kitchen table was just something I took for
granted.
Everyone made eating look so simple. All I
had to do was put the food on my spoon, bring the spoon to my mouth,
pull out the spoon, chew, and swallow. Nothing to it, right?
Wrong! I could get the food onto my spoon, but once I lifted the
spoon off the plate, the food was gone. We’re talking food
everywhere—the table, the floor, my lap, my brother’s lap, even the
walls. By the end of the meal I was lucky if half the food I
started out with made it to my mouth. I was very thin as a kid,
and I’m sure that one of the reasons I was so skinny is that I had to
work so hard at eating. I earned my food, every bite of it.
The one food I hated most in the whole world was
Jell-O. That is without a doubt the all-time hardest stuff to
eat. There should be a law permanently banning it from anyplace
frequented by people with cerebral palsy. The television
advertisement even encouraged kids to “see it wiggle.” Just what
I needed, a food that wiggles. All I had to do was look at
Jell-O and it started moving. Did you notice that I referred to
Jell-O in the past tense? That’s not by accident. Once I
became an adult, no one could tell me what to eat. And since
Jell-O was never one of my favorite foods anyway, I stopped eating it.
It just isn’t worth the effort.
Jell-O may be at the top of my list of the most
difficult foods to eat, but peas are a close second. Those
babies have a mind of their own. One small shove and they are off the
plate, across the table, and onto the lap of the person sitting next
to me. I hate it when that happens, especially when I’m at a
restaurant with someone I’ve just met. It’s embarrassing.
What do you say to someone who’s wearing your dinner all over his
shirt? “Excuse me, but may I have that back?” That’s like
asking for permission to do it again. Once is bad enough, but
occasionally I’ll be eating somewhere, and I’ll make the same mess
over and over. No matter how many times I try to take a bite of
food, invariably it will miss my mouth. And when that happens,
there’s not much I can do except swallow my pride, tell a joke, and
try to deflect some of the humiliation I’m feeling inside.
One food I am grateful for is mashed potatoes.
From peas and carrots to corn and lima beans, mashed potatoes are the
glue that holds everything together—everything on my dinner plate,
that is. Mom and Dad always wondered why I mixed my food
together. Everyone else took a bite of meat, a bite of
vegetables, and then a bite of potato. Not me. The
potatoes and the corn had to be together, and if we had gravy to put
on top, so much the better. My dinner plate might look a little
like the inside of a slop bucket, but I figured if that’s what it took
to avoid making mealtime seem like a free-for-all food fight at a
high school cafeteria, then so be it.
The most frustrating thing, even with mashed
potatoes, is that I never know when an accident is going to happen.
I never know when I’m going to push just a little too hard and have my
entire meal end up all over my neighbor’s lap. It reminds me of
the joke about the waitress who had cerebral palsy and was fired
because none of the customers liked the way she “tossed the salad.”
It’s never a question of whether or not I will make a mess. The
only questions are when the mess will occur, and who will be sitting
next to me when it happens.
In college, I had the habit of bringing a sweater
with me every time I went to the cafeteria, just in case anything
major went wrong during a meal. I often ended up with more food
on my shirt than in my mouth, and I dreaded the idea of walking all
the way back to the dormitory with a six-inch gravy stain across my
chest. Whenever an accident happened, all I had to do was put
that sweater on and zip it up over the stain, and nobody knew the
difference. I knew, though. And although I can joke about
it now, there have been times in my life when I’ve just wanted to
crawl under the table and disappear into the carpet.
One of my earliest memories of being asked about
my disability involves an incident that occurred when I was about
five years old. I was outside watching Dad do some work in the
yard when a neighbor boy saw us. “What’s wrong with you?” he
asked, noticing the trouble I had walking. He was a nice-enough
kid and asked what seemed to him to be a perfectly innocent question,
but it caught me off guard. I froze. I knew exactly what
he was asking, but all I wanted to do was hide. “What’s wrong
with you?” he asked again. I forced myself to talk and mumbled
something about having cerebral palsy. I managed to answer his
question, but inside I was dying of embarrassment. For the first
time in my life I was confronted by the fact that other people saw me
as being different—as disabled. And I have spent the rest of my
life hiding from that reality.
It’s important to understand that for a long time
I never saw myself as disabled. I always knew that I had
cerebral palsy, but “having cerebral palsy” feels different from
“being disabled.” It’s the difference between saying “I have
cerebral palsy” and saying “I am disabled.” Cerebral palsy is
what I have; disabled is who I am. The difference may seem
insignificant to some, but understanding the distinction between the
two terms is crucial to understanding what it’s like for me to live
life with a disability. Like the car I drive or the home I live
in, cerebral palsy is just one of the many aspects of my life.
Being disabled, on the other hand, goes to the very root of who I am
as a person. It’s a label that tells people that I’m
different—and possibly inferior.
I don’t want to give the wrong impression.
While I would rather not have to deal with the reactions of others, I
am not one to stay at home, live the life of a hermit, and never
venture out in public. For me, that is an unacceptable
alternative to the lifestyle I’ve grown accustomed to. I refuse
to settle for anything short of living a full and productive life as a
member of my community. I’m proud of the things I’ve
accomplished. I’ve put myself through four years of college,
plus graduate school, and started a ministry that has already affected
the lives of thousands of people. Yet, despite all of my
accomplishments, I still have a sea of insecurities so deep that at
times I am paralyzed by feelings of worthlessness and shame.
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