Mattie Stepanek was an acclaimed poet and humanitarian who died in 2004, a month before his 14th birthday, from a rare form of muscular dystrophy called Dysautonomic Mitochondrial Myopathy.
I met him for the first time in 2000, when he was 11 and received a National Caring Award. He was in a wheelchair with a tracheotomy tube attached to a ventilator, smiling with joy, and sitting next to his mother who has a milder form of the disease. She had four children, three of whom had already died from this inherited disorder; Mattie was the only one left.
A few months earlier he almost died when the bleeding in his trachea wouldn’t stop. His doctors were so sure he was dying they asked him what his last wishes were. Mattie said he wanted to publish his poems which he had been writing since he could hold a pencil. Friends granted his dying wish and published a couple hundred copies. Good Morning America and Oprah then found him and the rest is history. His poetry book, Journey Through Heartsongs, was on the New York Times bestseller list.
We met again the year before he died at the Kennedy Center in Washington D.C. when he introduced former President Jimmy Carter before a speech. Mattie said Jimmy Carter was his hero, because he believed in and promoted world peace. Mattie said that was his dream, too, to be a peacemaker in the world.
In the last year of his life he collaborated on a book with Jimmy Carter; it has just been published and is called Just Peace. Mattie was afraid he might not be around to finish it (he was right), but his mother edited his final words…… “my body is trying to die more and more, even though my spirit is trying to keep it going a little bit longer.” He said no kid with this disease had ever lived this long, “I have always known I’m living on borrowed time, and I have figured out that borrowed time takes one second at a time just like regular time. I just appreciate them as incredibly precious. I don’t care if I have an hour or a millennium, I’m going live it to the fullest because I can always find something to look forward to.
Mattie Stepanek inspired me and millions of others including Jimmy Carter who delivered the eulogy at Mattie’s funeral. The former President described him as “the most remarkable person I have known in my life.” At the service they read this poem:
“A champion is an optimist/a hopeful spirit/someone who plays the game/even when the game is called life/ especially 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.”
This is my New Year blessing: a happy, championship New Year to you all. I say this for all my relations, Mi takuye oyacin.