Inspiration - Mattie Stepanek

Mattie Stepanek

“I want to be remembered as a poet, a peacemaker, and a philosopher who played.”

~Mattie Stepanek

It is strange how inspiration can come to you. When anyone asks you who inspires you, we always seem to come up with these extremely generic answers. These recurrent inspirers include: Martin Luther King Jr. , Anne Frank, Mahatma Ghandi, Anne Frank, etc. These people are all tremendous human beings for their accomplishments and completely inspire worthy, but they do not answer the question how have they inspired you? Not your race, not history, not your religion, not your political views, but you. How has this person and their actions, shaped you as an individual? This makes the question all the more intriguing, and all the more difficult. So I began the quest of looking for someone who truly inspired me, a quest that took me deep in to the bowels of Google with very specific searches. After a while I stumbled upon a quite depressing website about kids who died suddenly. My hero, unfortunately, was found on that distressing webpage .

Matthew Joseph Thaddeus Stepanek was born in Washington D.C. in July of 1990. All was expected to go well except that Mattie was born with an extremely rare disease, known as Dysautonomic Mitochondrial Myopathy. The disability interrupted with Mattie’s autonomic functioning, which is the automatic things our bodies do regularly to keep us alive (breathing, digesting, regulating your heart beat). This disease made Mattie need medical attention constantly, but this never stopped him from being optimistic. Mattie was stuck to be stuck with a ventilator, forced to sit in a wheel chair, a Hickman line, weekly platelet transfusions, and many other medical needs. Mattie lived a tough life and doctors were all ready sure that he was terminally ill and there was almost nothing they could do to help them, but Mattie was a fighter. Mattie was the youngest of three older siblings all whom had been claimed by the same disease that Mattie suffered from. His mother was later diagnosed with the same disease and still suffers from it today. Yet tt was this very disease that took away his brothers and sister that drove Mattie to poetry. At the age of three Mattie began writing poems to cope with the loss of his older brother. He never looked at his disease as an obstacle, just as a reason to try harder. Mattie wrote 5 books, all of which landed on the New York’s Times bestseller list. Along with these books he wrote essays, short stories and poems, most of which have remained unpublished. One of Mattie’s poems was even performed by a teenage country singer who fell in love with Mattie’s work. Mattie wanted to help others not just himself so he donated and fundraised for many other kids with similar diseases, he sought to encourage others that there was hope. Mattie was appraised as a great public speaker who tried to spread the word of peace, through religion and his writing.

Science regrettably has not found a cure for Dysautonomic Mitochondrial Myopathy, however they have succeeded in prolonging the inevitable. While most children with this disease do not live very long. Most, if treated correctly, will live until they are 3. Mattie remained alive until he was 13, and lived by the idea that every day was a gift and it was his job to enjoy it its utmost potential.

Stuck. That’s what we are. Stuck, immovable, anchored to a rock in an ocean. That’s what at many times it feels likes living here on Curacao. I know that I shouldn’t complain and that I should be grateful for the life that I have, but at many time it feels that no one around me wants to accomplish anything. Everyone seems contempt with their mediocrity, and unfortunately I think it’s contagious. There are of course exceptions, but it seems that everyone seems to end up back right back where they started. Mattie is my inspiration because he was stuck. He was physically incapable of doing things that we take for granted everyday, like breathing or walking. Mattie lived every day to its full potential because he never knew when his last day would come. Mattie stuck out as an amazing person to me because of his disability. He didn’t let anything or anyone stop him from what he enjoyed doing so much. Philosophizing and writing. I personally have always sought to write something but have always remained somewhat caged and blocked by a force that I couldn’t move. Mattie inspires me to try and not only break through that force penetrating me from doing what I want to do so badly, but he makes me realize that it’s not necessarily the goal that you want to achieve, but the journey to the goal. Mattie never sought to be crippled or broken, and yet it is his very disadvantage that made him look at life so differently. He saw the world in ways we could hardly imagine. He was optimistic and tried for peace even if deep down he knew he would never reach it. Mattie’s worst enemy was himself but he was also his best friend. His oppression led him to his expression. Many people might think that life sucks and then you die, but Mattie proves that you can do more than just live your life. You can change it and mold it into one that suits you. That’s why Mattie inspires me.

“We must remember to play after every storm and to celebrate the gift of life as we have it, or else life becomes a difficult task, rather than a gift. We must always listen to the song in our heart and share it with others.”

~Mattie Stepanek (1990-2003)

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