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I’m always amazed when I hear someone talk about how much courage it
must have taken me to learn how to walk. I don’t feel that
what I did was all that courageous. There might have been some
tenacity on my part, but even that is pushing it a little.
It’s not like I had any real choice in the matter. Mom and Dad
were the ones pushing the physical therapy, not me. I wanted
to walk, but I wasn’t too keen on the idea of spending every night
doing the same thing over and over again until I got it right.
I had to learn to do everything step-by-step,
even things that most people never think about. Take falling,
for instance. I fall a lot, more so when I was younger than
now, although I can still take a really good tumble from time to
time. You might think falling would be the one thing I
wouldn’t have had to learn. Don’t count on it. There’s a
right way and a wrong way to fall, and an easy way to tell the two
apart is that the wrong way hurts.
Every week I worked with one of the therapists
from the local Easter Seals center. She would stand me up and
tell me to lean forward with my hands out in front of me to break my
fall. As soon as I hit the floor, she helped me up, gave me a
pep talk, and told me to do it again. And again, and again,
and again. I fell forward, then backward, then to one side,
and then to the other side. The idea was to fall until I could
move my hands without thinking, so that whenever I lost my balance,
I could hit the ground and not hurt myself. It must have
worked, because in all these years I’ve never broken anything.
And that includes the time I almost fell off the roof.
One of the common characteristics of kids with
cerebral palsy is that they’re afraid of heights. It’s scary
enough just falling while you’re on your own two feet, much less
when you’re standing on anything with any height to it. As a
kid, I was so terrified of heights that I couldn’t even sit on a
kitchen chair by myself without becoming petrified that I’d fall
off.
I was nine years old when Dad came up with a plan
to help me overcome my fear. “How would you like to go to the
roof with me?” he asked one afternoon after leaning a ladder up
against the side of the house.
I wasn’t too sure about the idea, but I decided
to give it a try if he promised to stay close behind me and keep his
arms where I could see them. I made the first step without any
problems. And the second step. But by the time I stepped
onto the third rung of the ladder, I was having second thoughts.
I was higher than I’d ever been in my life, and I was smart enough
to know that what goes up always comes down. And if I slipped,
coming down would definitely hurt—something that I wanted to avoid
at all cost.
“I don’t know about this,” I said, with more than
just a little fear in my voice.
“You can’t quit now,” Dad said, not letting me
give up.
It took ten minutes, and a lot of coaxing from
Dad, for me to climb my way to the top of the ladder, but I made it.
I’m glad I did. You cannot imagine how it feels to have
cerebral palsy, to have been afraid of heights all your life, and
then suddenly to be standing on a housetop. There’s nothing
like it. I felt like I was on top of the world, and from that
day forward, Dad and I took regular trips to the roof together.
I was sitting on the roof one day when curiosity
got the better of me. I wanted to see the ground below, so I
got down on my stomach, inched my way over to the edge of the roof,
and looked down. “Dad, I think I need help,” I said, beginning
to panic.
“What’s wrong?”
“I can’t get up.”
“What do you mean you can’t get up?”
“I think I’m going to fall!”
I hadn’t thought about the fact that the roof was
sloped, nor about the fact that from that position I wouldn’t have
strength enough to pull myself backward. I was stuck and had
only one way to go—down. Fortunately, and I say that with the
utmost respect for the power of gravity, Dad was close enough to
come to my rescue before I could make my first and last attempt at
being Superman.
I remember one time, about a year or so later,
when I would have given almost anything to keep from falling.
Our neighbors were pig farmers, and I loved going over to play in
their fields. I was there by myself one afternoon, as I had
been many times before, only this time I had a little trouble
getting out of the barnyard afterward.
It had rained earlier in the week, and the ground
was slippery. The only way home was through the gate, and the
only way to reach the gate was through the mud. I tried
everything I could think of to keep from falling. I took one
step, stopped to make sure I had my balance, and then took another
step. I almost made it, but not quite. I came within 6
feet of the gate before slipping, but that 6 feet might as well have
been 600 feet. And before I knew it, I was down on the ground
and covered from head to toe with mud and pig manure.
I pulled myself up, got to my feet, and tried
again. But my second attempt at reaching the gate was no
better than the first. Before I even tried to take another
step, I was once again swimming in the smelliest concoction of
sludge imaginable. I tried again, and again, and again, and
again, but every time I tried to stand up, I fell down. And
every time I fell down I got more and more soaked, until finally I
gave up on the idea of walking.
I would have called for help if there had been
anyone close enough to hear me. There wasn’t, though, and that
left only one thing to do. I had to crawl my way out, pulling
myself through the mud and whatever else the animals had left there
for me to bathe in. It was humiliating. Anyone else
could have reached the gate in two steps, but I had to crawl on my
belly through wet manure before reaching it. When I got home,
Mom made me take off all my clothes before coming inside. Why
not? I might as well strip naked in plain view of all the
neighbors. I didn’t have any dignity left anyway.
Most of the time, I can tolerate living with
cerebral palsy. I don’t like it, but I can tolerate it.
After all, what choice do I have? But on some days, having
cerebral palsy becomes almost unbearable. The day I came home
soaked in pig slime was one of those days. The day I was
forced to give up my crutches was another.
“Steve has done so well during the last couple of
years,” Dr. Suma told Mom, ignoring the fact that I was in the room
and could hear everything that was said. “I think it’s time
for him to stop using his crutches and begin using canes.”
I suppose that for most people there probably
isn’t much difference between the braces I wore on my legs and the
crutches I used for getting around, but to me the difference was
very real. Although I hated the braces and was embarrassed to
be seen wearing them, a lifetime of experience told me that the only
way that I could walk was with my crutches. They had allowed
me to do things that I had never thought possible, and I had learned
to rely on them as though my life depended on it. I was only
six years old, and the thought of throwing the crutches away and
trying to walk with canes sent chills down my back. I was
getting along just fine and wasn’t about to switch to the canes
without a fight.
It’s a good thing that I didn’t have any choice
in the matter. Although understandable, my fears were
unfounded, and I made more progress in the next twelve months than
at any other time in my life. After I had walked with the
canes for about a year, it was time to give them up. A lot of
work went into learning to walk unaided. I had to move one
foot forward, regain my balance, bring the other foot forward,
regain my balance again, and then repeat the process. I
started out by holding onto Dad’s hand, but as my coordination
improved, I was eventually able to let go and begin taking steps on
my own. That was the tricky part. I was okay as long as
I had something to hold onto, but as soon as I let go, I landed on
the floor. Falling was inevitable; the only question was of
how many steps I would take before going down. Other people
made it look so easy, yet here I was, taking two steps and falling
flat on my face.
There are very few times in life when a person is
able to look back and pinpoint a specific moment that changed his
life forever. Such a moment leaves an indelible mark on your
mind—one that you never forget. My life was changed the night
I went from taking 10 to 15 steps at a time to taking 143 steps
without falling. After all the years of going to therapy and
practicing my crawling and walking at home night after night, my
efforts finally paid off. It had taken me until the age of
seven to do what other kids usually do as toddlers, but I was
walking, and that’s all that counted. I felt as though I had
accomplished the impossible, and in many ways I had. I had
done what many people said I would never be able to do. I had
learned to walk, and for the rest of my life I will be able to look
back on that night as the night I took my biggest step, both
literally and figuratively. That’s the night I learned to
walk.
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