I was exercising my thumbs one fine day, changing channels at the speed of light, when I chanced upon a cute little boy with tubes up his nostrils and breathing heavily while speaking to CNN’s Larry King. He wore huge spectacles that slightly flattened his button of a nose. Beneath the glasses is a pair of bright eyes that shone with wonder and innocence. The boy’s name is Mattie Stepanek and watching him on TV that idle Wednesday morning was a life-changing experience.
Mattie needs a wheelchair to move about and a ventilator to breathe. His sentences are cut off by gasps for air as he talks about his life and his books. Yes, Mattie is a best-selling author. He did the near impossible and knocked Harry Potter and the Goblet of Fire off the top spot in the New York Times Bestseller list with his book of poems called "Heartsongs" and its follow-up, "Journey Through Heartsongs".
Mattie had three wishes: to have his poetry published, meet Jimmy Carter and have Oprah Winfrey and Rosie O’Donnell read his poems in their shows. All three came true; Carter even wrote the foreword to one of his books and Winfrey considers herself one of Mattie’s friends. O’Donnell read Mattie’s poems on air.
When asked what a "heartsong" is, Mattie replied that it is the song that grows within us and gives us joy. We all have it, he says. The courageous twelve-year-old is afflicted with a rare form of muscular dystrophy and has been in and out of comas. This deadly illness already claimed the lives of his three siblings and threatens to rob him of time, too. His mother Jeni also has it; she who had to bury her three kids and take care of the only one who remains.
I watched the entire interview in awe. I could not picture myself going through such a situation with the kind of lightness and positive energy that Mattie exudes. His mother, another courageous human being from whom Mattie draws strength, is a picture of a woman who has come to terms with her and her children’s fate.
Before King went on a break, he announced that Mattie’s mother would be joining them when they come back. The little boy started fidgeting in his wheelchair and flashed a wide grin. When they went back on air, Mattie was holding Jeni’s hand. It is this kind of sweetness and love that melts the heart. Those of us who have not an inkling of what goes through the body and mind of Mattie Stepanek when he has a seizure, those of us who only have to worry about not having enough time to go shopping can learn a thing or two about affection from a little boy who cherishes his every breath for it may be his last.
What is amazing about Mattie is his ability to see the miracles in his life everyday. When King asked him if he had ever felt angry because of his condition, he replied that there were moments when he asked: "Why me, God?" then he would reflect on his condition and ask again, "Why not me?" It can happen to anybody and he is no exception. Such insight and depth at a young age is inspiring beyond words.
Probably the sense of affinity I feel for Mattie stems from the fact that we are both slaves of the written word. We use writing to channel our thoughts and emotions, to make sense of this nonsensical world. Mattie began to write poetry at the age of three to veer his attention away from his illness and to make himself feel better when he could hardly get out of bed. I fill my journal with my mundane concerns and allow myself to be truly free when I write. It is like being with oneself and liking the company one keeps. Like Mattie, there are days when I cannot bring myself to get up. Sometimes, I just want to shut the world out and retreat into my own little corner of the universe. That’s when pen and paper take over.
Mattie says he considers himself a peacemaker. He is more than that to me. He is a healer, too, for he uplifts weary spirits and leads wandering souls back to the path they once trod on. He makes us look at our lives and see what is truly important. It’s not money, not fame nor the perfect skin and body. It is love, friendship, family and peace. Blessed with writing talent and a sensitivity unmatched by even those who are much older than he, Mattie is living proof that one does not have to jump off a cliff, take up weapons, fly a fighter jet or fill a coliseum with screaming fans to be considered great. Here is a sample of Mattie’s poetry:
On Being a Champion
By Mattie Stepanek
A Champion is a winner,
A hero...
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team...
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit...
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.
For making me realize this, Mattie has become my champion. He makes even the worthless habit of watching television an unforgettable moment.