Mattie J.T. Stepanek was only 13 when he died this week, but he had
already written five books of poetry. Their wisdom and spirituality awed
500,000 readers. Such an achievement is remarkable because he battled a
rare, painful, exhausting and fatal form of muscular dystrophy (MD) called
dysautonomic mitochondrial myopathy, that killed his three brothers and
sisters, two as infants and one at age 4. Though he was once healthy enough
to earn a first degree black belt in martial arts, since 2000 he was
dependent upon a wheelchair, a ventilator, and many blood transfusions.
Mattie told Larry King that his disease caused his body to forget to do
things we all do automatically "like breathing, circulating blood and
oxygen, digesting certain foods."
Yet at age 3 he said things so startling that his mother, Jeni, wrote
them down. "I love the fall, because all of the leaves turn into
colors...Some turn into orange. They are my pumpkin leaves. Some turn into
yellow. They are my butterfly leaves. ..They fall down so I can jump and
play and touch them. It is magic." Age 3.
At 6 Mattie described "Winter Tops: ...The trees, without any leaves on
top, stand on their highest tippy-toes and scratch-scratch-scratch at the
sky, like a dog scratching on its owner's knees for a bone. The winter
sticks are begging for snow.."
Though doctors did not think he would survive his first day of life, he
rallied, attended school through the 4th grade, climbed trees and ran. But
in 2000 he nearly died from uncontrollable bleeding in his throat and spent
five months at Washington's Children's Hospital. He was so near death
a doctor asked him if he had any last wishes.
"He had three: to have his poetry published, to talk about peace with
Jimmy Carter and to be on the Oprah Show," recalled Marissa Garis-Kiefer of
Children's Hospital. She started making calls to anyone to fulfill his
wishes. She found a small publisher in Virginia, VSP Books, which published
200 copies of "Heartsongs."
They sold out in minutes at a party Children's Hospital threw for him.
Marissa wrote President Carter, who called and had a 10 minute chat with his
admirer. She wrote Oprah with the same success, and his first book shot to
the Best Seller list.
After the 9/11 attack, he wrote "Hope Haiku" about the Muslim-Christian
clash: Gentle, and peaceful. We are the children of one God, Yet so many
faiths. True, we are different...Unique mosaic of life, Still, we are
the same.
United, we are...The festive fabric of life. Divided, we fall.
Two months later: "Perhaps we should all cry more together. For each
other. Perhaps if everyone in the world cried with and for other people and
life, we might be more caring..."
In January, 2002: Let this truly be the celebration of a New Year...
Let us remember the past, yet not dwell in it.
Let us fully use the present, yet not waste it.
Let us live for the future, yet not count on it.
Let this truly be the celebration of a New Year, as we remember and
appreciate and live rejoicing with each other."
He showed no bitterness about living with a tracheotomy or in a
wheelchair. Asked by Larry King how he remained so hopeful, Mattie replied:
"I get frustrated. I get sad. I have feelings, too. What keeps me going, a
big factor, is my mom who's always been there for me." (His father fled.)
Another hope comes from prayer. I am very close to God, and I feel there is
a heaven and you will move on. But we should use our time on earth. We
should enjoy it while it lasts."
Mattie's poetry put his Catholic faith more eloquently. Consider "About
Life" from his book, "Celebrate Through Heartsongs:"
"Life! Something to be celebrated...
Something to be savored while it lasts.
For although life is wonderful
Life is not forever.
People grow older and then they die.
Some people even die before they grow older.
Dying may seem sad and scary.
But once death is over, We can actually live Forever in heaven."
Jerry Lewis, who had Mattie on his Muscular Dystrophy telethon, said,
"Mattie made people want to reach for the best within themselves. With
Mattie there was always a silver lining. Life threw its worst at him
and he responded by seeing the good. He was - he is - a shining star."
Mattie taught us how to live and how to die.
