HomeCare Mark Smith Article Oct 2016 (PDF)

The

POWER
of One Therapist

A personal story of complex rehab technology

By Mark E. Smith

T

his past July, as the tires of my
power wheelchair rolled along
the marble floors of the Senate
and Congressional office buildings on
Capitol Hill, the inspiration of it all was
stronger than ever. After all, how does
an infant born into a world of grim
realities turn that start into a life of

limitless possibilities by age 45?
For me, the answer is that I was
given two of the most remarkable
tools to not just survive, but also to
truly thrive. First, life gives all of
us the ultimate gift in the form of
resilience. And, second, 40 years ago,
a lone therapist gave me the gift of

complex rehab technology. When the
two combined, it fueled a life where
seeming barriers became boundless
potential, where seeming obstacles
became opportunities, where seeming
grim prognoses became unlimited
optimism. Those two gifts allowed
me to achieve levels of success with

Smith, far left, on Capitol Hill to advocate on behalf of those who use complex rehab technology.

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HomeCare | OCTOBER 2016

disability that were flat-out deemed
impossible. Indeed, as I rolled along
the halls of Capitol Hill this summer,
advocating for the preservation of
complex rehab technology, I not only
knew why I was there, but also what
led me there beginning more than
45 years earlier.
March 2, 1971, was a bleak day. I
know that is odd to say about one’s
own birthday, but there is no other
way to describe it. My grandfather was
serving yet another stint in California’s
San Quentin prison for armed robbery
of pharmacies. My grandmother was a
heroin addict and prostitute who would
commit suicide in just a few years. At
7 o’clock that morning, as my mother
prepared to give birth to me, my father
was nowhere to be found, having been
drinking at a bar all night.
Now, it’s a heart-wrenching reality
that many children have been born
into lives of such impoverishment and
dysfunction. The only factor that made
my circumstance different was that
when I was born at 7:21 that morning,
I wasn’t breathing. Was it due to an
overdose of an epidural? Was it due
to my mother drinking and smoking
during her pregnancy? We will never
know. However, what we do know is
that the situation went from bad to
worse. There was no infant respirator
to revive me in the delivery room,
and the only one in the hospital was
broken. The only hope to get me
breathing—and keep me breathing—
was the doctor’s manual CPR.
Fortunately, there was a children’s
hospital nearby, and as they rushed me
there, they informed my mother that I
wasn’t going to live. There is no way to
diagnose a condition so quickly under
such circumstances, but the doctors
were sure I was brain dead, with only
a few hours to live.

The author in an early-model power wheelchair that gave him the gift of mobility.

Hours, days, then weeks went by,
and I simply kept breathing. I showed
no cognitive or physical abilities—my
tiny body racked by seizures—but my
vitals were strikingly stable.
Despite my family’s profound
dysfunction, my mother somehow
found her maternal instincts and took
me home, rather than institutionalize
me as the doctors suggested. It was
a remarkable gesture considering my
parents struggled with addiction, and
neither possessed an education past
the 10th grade level. The downside
was that my home life was grim and
unstable, where my parents’ own issues
most often took precedent over my
care. In fact, I wasn’t a vegetable as
labeled by doctors, but fully aware.
And my earliest memories are of

witnessing terrifying fights between my
parents—with no mobility to escape.
My youngest years were spent trapped
in a body ultimately diagnosed with
severe cerebral palsy and a family
ravaged by dysfunction.
By the age of five, life was tough.
My parents were chased around
California by eviction notices,
punctuated by a marriage that was
on-and-off. Meanwhile, along with
no ability to care for myself in any
way, I had virtually no mobility. I was
primarily carried and left wherever I
was placed. The world seemed both
an unfathomably large place and an
inescapably small one all at once.
Amongst the harsh realities, though,
a miraculous individual entered my
life, literally picking me up from the
homecaremag.com | HomeCare

57

rubber mats of a “special school,” as
they were called before mainstream
education existed. She was a lone
physical therapist, who to this day
I’m not sure knows how profound her
actions were.
A wheelchair rep left a power
wheelchair in her therapy room, and
she thought of me, the 5-year-old
with severe cerebral palsy who spent
his days on rubber mats. It was the
mid-1970s, and it was totally unheard
of for a child my age to use a power
wheelchair. In fact, they didn’t even
make them in my size, and the one
in her therapy room might as well
have been the size of a school bus
compared to my tiny, balled-up frame.
I cannot fathom from where she drew
her intuitive insight—based on my
condition—but without hesitation,
she sat me in that gigantic power
wheelchair. As I struggled to keep my
balance, she used everything from
belts to tape to Velcro to secure me in
the chair. As she explained how the
power wheelchair worked, the machine
was an absolute mystery to me. The
concept that by pushing a joystick I
could move anywhere I wanted was
the most foreign idea I had ever heard.
Was this possible? Could I somehow—
magically—move on my own? If so,
where could I go? What could I do?
How would my life change?
Tensing every muscle in my body,
I reluctantly reached for the joystick,
a small metal post with a gray rubber
tip. With the most courage I had ever
mustered—after all, I had never known
how to pursue true independence—I
pushed the joystick. As if on a magic
carpet, the power wheelchair took me
across the room. I was so astonished
by the miracle of it all, I don’t recall
letting off the joystick for even a
moment. Maybe I didn’t want that

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HomeCare | OCTOBER 2016

feeling to ever go away. In that instant,
at the command of that joystick, I went
from a world of confinement to a world
of liberation. For the first time, I felt as
though I was a person.
Within six months, thanks to
that visionary therapist, I had a
power wheelchair of my own. More
importantly, I had a sense of identity
that never existed before. Two years
later, I was no longer confined to a
rubber mat in a “special school,” but
was beginning the third grade in a
public school as one of the very first
children with a severe disability to be
“mainstreamed.”

“

For the first
time, I felt as
though I was
a person.

The first day of school was one of
the hardest of my life. No one knew
how to react to me, and I struggled
to fit in. I went home that day, rolling
down the sidewalk in my power
wheelchair, with tears streaming down
my cheeks, knowing I had to go back
the next day. Indeed, under the power
of both my wheelchair and the human
spirit, I vowed to do whatever it took
to succeed. I was free, and I was never
going back to a rubber mat.
Through junior high and high
school, my power wheelchair ushered
in a life that propelled me in directions
unimaginable. As my home life
completely disintegrated—alcoholism,
divorce, neglect, poverty—every
morning, no matter what transpired
at home, my power wheelchair rolled
me down many a sidewalk on a path

that I knew would take me beyond
disability and family dysfunction.
Every morning, I knew my chair had
the power to take me as far as my
dreams, no matter how unrealistic
they may have seemed to others from
the moment of my birth. I knew that
I had the power. I slowly learned that,
although I didn’t deal the cards, I
could play them.
Soon, those dreams became a
reality. I found my wheels rolling
down the halls of San Francisco State
University. I found my wheels rolling
down the halls of the hospital where
my daughter was born. I found my
wheels rolling down the halls of the
company I work for—a global leader
in complex rehab technology. And, I
found my wheels rolling down the halls
of Capitol Hill, advocating not just on
behalf of those who use complex rehab
technology, but thinking back to myself
as a five-year-old on a rubber mat
awaiting the technology that would
liberate my life.
For many years, I didn’t know why
that physical therapist picked me up
from that rubber mat and placed me
in that power wheelchair. Was she
curious to see how a child with such a
severe disability as mine would do in a
power wheelchair? Was it fate? Was it
divine intervention? After all, how does
one explain such a life-changing
occurrence, especially given the era?
What I now know is that while all of
those certainly could be the case, there
is one absolute: that one therapist
understood not just the value of
complex rehab technology, but also the
value in each individual’s life.
Mark E. Smith is a 20-year veteran of the
complex rehab industry and is a general
manager with Quantum Rehab and Pride
Mobility Products. He lives with his wife
and two daughters in the Pocono region of
Pennsylvania. Visit pridemobility.com.