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"A
Heart Filled
With Song"
By
Judy Winter
attie Stepanek is creating quite a stir for a
boy who's only eleven.
I first learned of the young author with the rare
form of muscular dystrophy called mitochondrial myopathy, while
channel flipping one afternoon.
I was taking a break from my looming deadlines
as a journalist on disability issues, searching for a potent rush
of creative inspiration to make inspired words flow more easily.
And there it was, in the form of a home-schooled, 11-year-old
Harry Potter fan holding his own with Oprah Winfrey, the Queen
of overnight bestsellers.
Unlike many authors with visions of instant literary
success and financial windfall, Matthew Joseph Thaddeus Stepanek
wasn't on Oprah to hype his books of poetry. But since his appearance,
Heartsongs and Journey Through Heartsongs have catapulted up the
charts, landed him a larger publisher in Hyperion, and created
numerous requests for major media interviews. His third book Hope
Through Heartsongs will be out in April 2002. Heady stuff, especially
for an 11-year-old wheelchair user who loves to play Lego's and
now calls Oprah a good friend. But Mattie Stepanek doesn't appear
easily influenced by glittering achievements. He's focused on
things of more lasting value.
Mattie Stepanek was on Oprah to fulfill the last
of three personal wishes. He'd already had his award-winning poetry
published and met his hero, former President Jimmy Carter. Now
here he was, delivering poetic messages of peace and love in the
aftermath of the horror of September 11th, with one of the most
successful media moguls in the world. Mattie Stepanek thoughtfully
shared his refreshing life perspective by answering Oprah's questions
with an edgy wisdom rarely seen in more accomplished individuals
decades older.
"Going to Disney World ends in a week,"
Mattie explained of his choice of wishes. "But being able
to talk with Jimmy Carter, being able to have my books published,
being able to talk to you here today, lasts forever."
Mattie Stepanek quickly charmed even the worldly
Oprah.
As a journalist, I have conducted dozens of interviews
with inspiring individuals with disabilities, and parented a child
with cerebral palsy for eleven years. I no longer impress easily,
but I found Mattie's words surprisingly energizing. His remarkable
composure, soft voice and thoughtful responses challenged Oprah's
worldwide audience to look past his obvious physical challenges
and unglamorous medical equipment and into his wise eyes.
In the middle of all the attention Mattie is now
receiving, I can't help but think about his mother Jeni, who unknowingly
passed on this relentless illness to her four children. She must
be a remarkable woman to have raised a gifted son so well in light
of unspeakable loss. Through Mattie, it's easy to understand why
Jeni Stepanek is Maryland's 2001 Muscular Dystrophy Association
(MDA) Personal Achievement Award Recipient.
For thirty minutes, her remaining child held me
captive with his insightful words. As I marveled at Mattie's maturity
and poise, I realized that sharing the stage with Oprah probably
isn't nearly as unnerving as spending a decade cheating medical
statistics, or using a ventilator to ensure your next breath and
a wheelchair to conserve precious human energy. Perhaps after
experiencing the untimely death of your three siblings from a
cruel disease and watching your mother face daily personal challenges,
few things unnerve you easily.
When Oprah was over, I headed to the local bookstore
because I needed to read his books. I wanted to find out if Mattie
Stepanek was creating an emotional impact worldwide because of
his wheelchair and obvious physical challenges, or if his disability
was secondary to his heartfelt words of expression. The latter
held the potential for the kind of rare societal impact that transcends
disability and delivers a powerful message to the world.
As a journalist, I warned myself to resist jumping
on the Mattie Stepanek media bandwagon, a trail that will no doubt
cool with the next instant celebrity. Mattie Stepanek deserves
much more than just being the literary darling of the moment.
As I gently turned page after page of this remarkable
young storyteller's books, it was hard to believe that this child
who began recording poetry at age three, could write words with
meaning so pure and deep. Too often our world is tempted to explain
away the inspiring work of individuals with disabilities by announcing
that it must be the challenges of their daily lives that leads
them to newfound wisdom, fortitude and success. I believe Mattie
Stepanek was born with a gift for words just as surely as he was
born with the genetic makeup for muscular dystrophy.
One of the greatest gifts Mattie shares with us
all is the reminder that a disability is always secondary to a
person's inherent value, perhaps existing only to ensure we pay
closer attention to the person's human message. This young peacekeeper
and poet can teach anyone willing to listen carefully to his words
exactly how wisdom and humanness far transcend disability.
While reading Mattie Stepanek's poetry, it isn't
always clear whether or not he has a disability, because that
isn't all he writes about. What is more obvious is his eloquent
gift for words and his remarkable heart and soul. He is a writer,
first.
Heartsongs, Mattie explains, represent our inner
beauty. He also equates the word with being a peacemaker, like
his hero and new friend Jimmy Carter. "It's the song in your
heart that wants you to help make yourself a better person, and
to help other people do the same. Everybody has one," Mattie
Stepanek told Oprah confidently.
Perhaps that is his greatest message, and the
world's biggest challenge.
Samples of Mattie's Poetry:
All poems are from Journey Through Heartsongs
VSP Books Copyright 2001
Eternal Echoes Grounded Lesson
Our life is an echo Life is a treasure.
Of our spirit today, People should enjoy it,
Of our essence Even if digging
As it is, To it, or
Caught between Through it,
Our yesterday Is a challenge. February 2000
And our tomorrow.
It is the resounding
Reality of who we are,
As a result of
Where we have been,
And where we will be,
For eternity.
Spring 2000
By Mattie J.T. Stepanek
A New Hope
I need a hope… a new hope.
A hope that reaches for the stars, and
That does not end in violence or war.
A hope that makes peace on our earth, and
That does not create evil in the world.
A hope that finds cures for all diseases, and
That does not make people hurt,
In their bodies, in their hearts,
Or most of all, in their spirits.
I need a hope… a new hope,
A hope that inspires me to live, and
To make all these things happen,
So that the whole world can have
A new hope, too.
May 1999
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