I am currently reading the biography of Mattie J.T. Stepanek, a boy who died of a rare form of muscular dystrophy in 2004. Titled Messenger, the book is written by Mattie's mother Jeni, who herself suffers from an adult form of his disease. Before Mattie, she lost three children in infancy and early childhood before doctors finally identified dysautonomic mitochondrial myopathy as a condition she had passed onto them through her genes.
Mattie's life is a chronicle of unbelievable suffering juxtaposed with equally unimaginable beauty, hope and joy. He spent many years of his life in the Paediatric ICU, undergoing countless operations and transfusions. He almost died on several occasions, and spent days in a coma. He lost friends to muscular dystrophy, and when he was three years old, saw his own brother succumb to the disease that would kill him also.
From the beginning, there was no doubt Mattie was going to die. As the years passed, as he continued to survive and even thrive (though confined to a wheelchair and hooked up to a tracheostomy tube and oxygen tank), the urgency to savour each moment became more intense for him and his loved ones, who were all too aware that at any time his trachea (shredded by so many operations) could finally split, drowning him in his own blood.
Mattie's life would be nothing more than a chronicle of loss, pain, suffering and sorrow if it were not for the heroism that he displayed during his short time on earth. At the age of three, he began to compose poems to cope with his brother's death. At twelve, his remarkable character and spirit in the ICU came to the attention of Oprah Winfrey and former President Jimmy Carter. He later travelled the United States, giving talks on his favourite themes: peace and hope. He appeared on The Oprah Winfrey Show, Larry King Live and Good Morning, America, while his books of poetry rose to the top of New York Times bestseller list.
When he died, two weeks before his fourteenth birthday, hundreds of people attended his funeral. Delivering the eulogy, Jimmy Carter said, “We have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek. His life philosophy was 'Remember to play after every storm!' and his motto was: 'Think Gently, Speak Gently, Live Gently.' He wanted to be remembered as 'a poet, a peacemaker, and a philosopher who played.'”
Though few of us will ever know the kinds of suffering that Mattie and his family experienced, all of us go through periods of loss, pain and sorrow. As I have frequently pointed out, existence itself is a kind of suffering because as human beings, we are naturally subject to forces beyond our control. For people like Mattie, those forces were simply more intense, which made him a true icon by which we can come to terms with our human condition. Specifically, Mattie's story offers us a vision through which we can find hope in the midst of our suffering.
Too often, we think of hope as the possibility that the difficulties and struggles of life might be taken away. We equate hope with escape, and so come to live in expectation of “miracles,” by which we mean some unexpected event that will lift our burdens and restore us to “normal” life, whatever we imagine that might look like...
Mattie's life and death show us another way. For him, hope was not about the commutation of an almost-certain death sentence. His vision was more profound and complex, as one of his poems, “Abyss,” testifies so eloquently:
My life is halfway down an abyss,
A deep, immeasurable space.
A vast chasm
My life is not how I planned it to be
Is not how I want it to be
Is not how I pray for it to be.
In the darkness of this pit
I see a small light of hope.
Is it possible for me
To climb such heights?
To rebuild the bridges?
To find my salvation?
The song in my heart is so quiet
Is so dark
Is so fearful,
I dare not stay in this abyss.
Though deep and vast, I'm only halfway down
Thus I am already halfway up
Let such words fall onto my heart
And raise me from this depth.
I prefer not to analyze these words. What I hear is the poet's heart seeking fulfilment in the midst of an abyss. Hope, for him, is not about escaping the 'vast chasm' as about finding a way to be 'raised up' within it. Hope is his choice to see his suffering as the medium in which to find salvation. I am reminded of another poet, T.S. Eliot, who said, “I have lost my sight, smell, hearing, taste and touch: How should I use them for your closer contact?”
At the beginning of the Orthodox divine liturgy, the priest says, “In the tomb with the body, in Hades with the soul, in paradise with the thief and on the throne of glory were You, O Boundless Christ, filling all things.” I am certain Mattie would say 'amen' to these words. His vision of hope is not the longing to escape from our suffering, but the daily choice to ask how we can use our suffering to find ever closer contact with the One who meets us in the midst of death itself. Only then can we truly find divine freedom inside our human bondage, eternal joy inside our temporal sorrow, and heavenly light inside our earthly darkness.