An 11-year-old's poem of inner peace

Friday, November 23, 2001

UPPER MARLBORO, Md. -- For a first-time author, Mattie Stepanek has had quite a literary debut.

His book of poetry, "Journey Through Heartsongs," is among the Top 10 on The New York Times best-seller list. He talks peace with former President Jimmy Carter and counts TV talk show queen Oprah Winfrey and comedian Jerry Lewis among his friends.

He's also a much sought-after public speaker, with a schedule packed with television appearances, book signings and motivational speeches.

Not bad for an 11-year-old boy.

"I'm careful not to let it go to my head," he said of his newfound fame. "My mom says my hat still has to fit my head by the end of the year."

His mother, Jeni, calls him a "52-year-old boy." But considering all that Mattie has faced in his short life, it's understandable that he's mature beyond his years.

Mattie has a rare form of muscular dystrophy, a disease that took the lives of his three siblings and left him dependent on a ventilator that feeds oxygen through a tube attached to his neck.

He motors around the basement apartment he shares with his mother in an electric wheelchair attached to an extension cord that powers his ventilator.

With closely cropped blond hair and wire-rimmed glasses, Mattie is small for his age. He fidgets in his wheelchair like any adolescent forced to sit in one place for too long. His ventilator, strapped to his chair, constantly wheezes in the background.

The chair, which he nicknamed "Slick," is covered with pockets and nooks that hold things he has accumulated from friends and admirers. His favorite fishing hat and a religious icon are tucked in one side with some multicolored glass stones Winfrey gave him.

Mattie nearly died this summer from his disease and spent five months in the hospital. But he's not afraid of death -- he often writes about it in his book. His poetry is full of life, hope and the inner voice that he calls a "heartsong."

"It's our inner beauty, our message, the songs in our hearts. Some of us feel we can spread it. My life mission is to spread peace to the world. I'm not sure everyone is listening to their heartsongs now, especially with the national tragedy," he said.

That's probably why the boy's poetry has had such an effect on people since the Sept. 11 terrorist attacks.

Winfrey has featured Mattie on her show four times, including once with Carter. Mattie and his mother have been swamped with e-mail, cards and phone calls from people wanting to thank him.

"He's had an overwhelming response from people saying, 'You've made me stop and think about these life storms I'm going through and put things in perspective,"' said Jeni Stepanek, 42, who also has muscular dystrophy and uses a wheelchair. "That is giving the world a gift that will live beyond him."

Stepanek, who is divorced, is a doctoral student at the University of Maryland. She has an adult form of muscular dystrophy that affects her muscles and does not lead to the deterioration of the respiratory system.

Mattie says his first poem came to him when he was 3 years old -- he dictated it to his mother. He doesn't remember the poem, but Stepanek says it was about Mattie's older brother, Jamie, who was dying at the time.

Many of Mattie's poems focus on the death of Jamie, who was 4 when he died in 1993. Mattie never met his other siblings. Katie was 2 when she died and Stevie lived just six months.

Mattie's career as an author started with his own gift, given to him by an Alexandria, Va., publisher.

Mattie says he has always had three specific wishes -- to meet Winfrey, speak with Carter and publish a book of his poetry. So as he lay in the intensive care unit of Children's National Medical Center in Washington this summer, hospital officials tried to meet his unusual requests.

They got a response from Cheryl and Peter Barnes, owners of VSP Books, a company that produced mostly children's books. Not knowing how much time Mattie had left, VSP printed a paperback edition of his poetry in less than a week. It was titled "Heartsongs."

"We thought we were going to print 50 books and say, 'Here you go, kid,"' said Cheryl Barnes. "What happened was this tremendous demand through people who knew him and saw his poems."

VSP held a news conference in his hospital room to promote the book launch and from there, sales took off. Mattie came out with his second work, "Journey Through Heartsongs," in October.

Between the two editions, Mattie has sold more than 250,000 of the books with covers that he illustrated with painted hearts bearing musical notes.

Copies of Mattie's books have just been sent to reviewers, Cheryl Barnes said.

She acknowledges that part of his appeal is due to his age and illness, but she believes people are also touched by the quality of his work. "The poetry stands on its own," she said. "Mattie couldn't write what he writes without going through what he did."

The foreword to "Journey Through Heartsongs" was written by Carter, who called Mattie while he was in the hospital. Mattie idolizes the former president for his peacemaking efforts, and the two have spoken several times since then about peace.

"He proves that finding peace within one's self can lead to harmony among families, communities and nations," Carter wrote in Mattie's book.

Lewis wrote a blurb on the back of the book jacket. (Mattie was featured in the final hour of Lewis' recent Muscular Dystrophy Association telethon.)

Mattie juggles a tight schedule these days, between book signings, his home school lessons and speeches he gives as a Muscular Dystrophy Association ambassador.

Despite his grown-up life, Mattie also takes time to be a kid. He has an encyclopedic knowledge of the "Harry Potter" books, and is plotting ways to get tickets for the coming movie.

Mattie knows he probably won't see a cure for his disease, but he has lived longer than any of his siblings and his doctors say it was a miracle that he left the hospital this summer.

So he's making the best of the time he has, with plans to publish his next book of poetry this spring and possibly get an agent to handle the flood of media and appearance requests.

And he hopes to have more conversations with Carter, to make sure he stays on the right track as a peacemaker.

"After talking to him, I think I'm doing the right thing," he said.


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