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My mother, Wanda Hughes Chance, was 20 years old and in perfect health
on the morning I was born, August 12, 1958. She had entered the
Beloit Memorial Hospital, in Beloit, Wisconsin shortly after midnight.
Six and a half hours later, during the delivery process, trouble
began. I was halfway down the birth canal when the doctor
realized that I was in a breech position and that my head was too
large. My air supply was cut off. I was turning blue and
would have died except for the doctor’s quick work. As it was,
five minutes elapsed between the time I started choking and the time I
took my first breath. I was alive but started breathing too late
to prevent the brain damage that left me disabled.
It became obvious as early as six months later
that something was wrong with me. I lacked any coordination and
lagged behind other babies my age in developmental milestones.
The doctors blamed my slow development on laziness. They
insisted that I was only going through a stage and would undoubtedly
grow out of it, given enough time. Each visit to the hospital
left my parents more confused and yet more determined to continue
their search for some plausible explanation of my difficulties.
Finally, after two years of listening to unfounded medical opinions,
they heard the answer from a specialist trained in childhood
orthopedic disabilities. His diagnosis was cerebral
palsy—undoubtedly, he said, the result of oxygen starvation at birth.
I’ve never experienced life as a “normal” person,
if such a person exists, so I do not know what it’s like to live
without a disability. Most folks see the visible effects of my
cerebral palsy—the gait of my walk, the jerkiness of my arms and
hands, and the slowness of my speech. People who spend time with
me also know that cerebral palsy affects my everyday activities, from
the way I eat breakfast and dress myself in the morning to the way I
brush my teeth before going to bed at night.
As difficult as the obvious hurdles of having a
disability are, they don’t begin to compare with the hidden effects of
cerebral palsy. Cerebral palsy affects the way I see myself as a
person, the way I relate to other people, and even the way I view God.
Nothing I ever do, no one I ever meet, or nothing I ever think is
unaffected by the fact that I am disabled.
If, by reading this book, you’re expecting to
find the story of a disabled man who conquers all of his difficulties
with an unshakable faith in Jesus Christ, you will be disappointed.
I do profess Christ as my savior. Nevertheless, I am also the
type of guy who asks a lot of questions. Believing in God
doesn’t automatically make life easier and often makes the questions
harder to answer. Why, for example, did God allow me to be born
with cerebral palsy? This question might be easy for some people
to answer, but for me it goes directly to the root of who God is.
Where was this loving God on the first day of my
life, when I needed him most? Did he go out to the back nine for
an early-morning round of golf, only to return to the clubhouse too
late to check his messages? Maybe he had stayed up late the
night before, watching The Tonight Show. Perhaps he hit
the snooze button on the alarm clock once too often and, by the time
he showered and dressed, had time to do only half a job. He
saved me from dying but was too late to do anything about the cerebral
palsy.
I’m ashamed to even think that God didn’t care
about what happened to me on the morning of my birth. That in
all the things God had to take care of, I somehow got lost in the
shuffle, and he never took the time to either prevent or fix this
disability called cerebral palsy.
Don’t get me wrong. I am extremely grateful
for the life that I have. But being grateful doesn’t take away
the shame that comes from being different. It also doesn’t take
away the one question that has haunted me for years: Where was
God during those five crucial minutes I spent trying to take my first
breath of air?
I know many people would prefer that I live on
blind faith instead of exploring my doubts about God. They
believe that questioning whether God is responsible for the pain and
suffering of the world borders on heresy and has no place in the
Christian faith. They’re convinced that nothing good can come
from raising such pointed questions and would prefer that I keep mine
to myself.
I understand their concern. I, too, am
uncomfortable asking these questions, simply because I am afraid of
where the answers might lead me. Will they bring me closer to
God, or will they push me away from him? I don’t know.
What I do know is that once I’ve asked the questions, I cannot simply
blot them out of my memory and pretend they never existed. To do
so would be dishonest, because no matter how hard I try to ignore the
questions, they never go away.
Blind faith doesn’t work for me. It never
has. I reject the notion that it’s wrong to question one’s
beliefs. There must be room in the Christian faith for people to
ask penetrating questions, especially if those questions are directed
toward God. I do want answers, because the answers to my
questions have a direct bearing on the way I relate to him now that I
am an adult. Wherever God was during the time of my birth, he
now expects me to have a personal relationship with him. That’s
just a little hard to swallow if I suspect that he is ultimately
responsible for my having cerebral palsy. Why should I worship
the God who apparently deserted me on the delivery table?
Although I hope I can find answers, I probably
will never resolve these questions completely. That’s okay.
The important thing is that I face my questions and doubts—to be
honest with myself and with God. I’ve spent a good part of my
life searching for normalcy, trying to pretend to myself and the rest
of the world that I’m not really disabled—that I’m not different from
most other people. It is essential to my mental and spiritual
health that I learn to see myself as I am. I must face my
imperfections and weaknesses, and I must learn what it means to bring
the shame of having cerebral palsy to God.
Included in this book are many stories about my
life, from my childhood and school days, to my dating experiences, to
my professional life, and more. I have attempted to become as
vulnerable as possible on these pages, in hope that my readers will
finish the book feeling almost as if they have met and conversed with
me in person. My imperfections may be more noticeable than most
other people’s, yet everyone feels shame—that sense of never being
good enough and always falling short of expectations. It’s a
part of being human. If, by reading these pages, my readers
gain an understanding of what it means to be a person with a
disability, and then come to better understand the pain, weakness, and
grace in their own lives, I will have succeeded in my goal as an
author.
Steven G. Chance
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