I was once told that I shouldn't have kids, because the child could be born with Asperger's, like me.   I answered with a question - "Would you have given the same advice to my parents?"

"Well," came the answer, "look at all the difficulties you've had, and the pain you've had to endure...surely you wouldn't wish that on a child." 

Well, it's true that living my life with Asperger's has often been difficult.  Yes, I have dealt with my fair share of pain and rejection... In a perfect world I wouldn't want a child to go through the same issues.  But I also had to wonder...is life just about avoiding pain?  Or is there something more?  

Looking back on my life, I find that the most painful experiences taught me the most valuable lessons.  But, you never learn what those lessons will be until you're on the other side.  How can you judge the quality of a person's life and experiences, before they have had them? 

 The Legacy of Mattie J.T. Stepanek and HeartsongsI was reminded of this conversation recently, when I saw the announcement that a new book was coming out about the life of one of my personal heroes -  Mattie Stepanek.   Born with a life-threatening neuromuscular disease, Mattie knew what it was like to live with pain, both physical and emotional. 

As he told Larry King, back in 2002:

"The doctors didn't think I would live one day, but I did. So they said, OK, he's not going to last six months. I did. Then they said, OK, we're drawing the line at 2-years-old, three years, or he's going to die by then, and you might as well let him go now. And my mom said, no. I'm going to train this spirit. So I lived to be two, and they said, OK, five, five, five is it. Then I lived to be five, and then they said 10. And here I am, an 11-year- old. So now they're saying teens or some time as a young adult, but I plan to be 101."

Although he didn't make it to that milestone, he packed a lot of life into his "almost fourteen" years.   To cope with the loss of  his older brother (and two other siblings he never knew) to the same disease that later took his life, he began writing poetry at age three.  He went on to author seven books, became the National Goodwill Ambassador for the Muscular Dystrophy Association, appeared on Oprah, Larry King Live, and Good Morning America, as an inspirational speaker and advocate for peace. 

 A Portrait Through HeartsongsAs his mother quoted in the introduction to his 2005 book "Reflections of a Peacemaker," his sixth compilation of poetry, Mattie said, "...across the years, I have written about senses, about seasons, about nature, about journeys, about pain, about laughter, about hope, and a lot about peace.   I write about anything that touches the essence of my existence.  What I witness, what I feel, what I think, what I fear, what I treasure.  In fact, everything that write comes from some personal experience--the death of a sibling or a friend, a visit to or from Heaven, the excitement of the changing seasons, attitudes and choices that promote peace for individuals and the world...I write about life, which is our greatest gift."

Last year, writing about the death of Randy Pausch, I defined a true, real-life hero, as a regular person who, by example, makes you re-evaluate your own life, through their own actions and attitudes.  Mattie was that for me.  The day I first saw him speak (during one of his television appearances), I found myself absolutely in awe - his attitude, his wisdom...at such a young age.  If he could live life with such hope, such idealism, such joy, while facing the challenges he faced, what excuses could I make for myself?   I left the house that day feeling uplifted in a very powerful way. 

Seeing Lessons by Tom SullivanTom Sullivan, in the book "Seeing Lessons," described the experience of seeing Mattie speak on the Oprah show (where he was also a guest):

"...I wonder if I even breathed--I know I didn't move--because Mattie's story was so remarkable, emotional, and inspirational.  I understand that my life was forever changed by the spirit of this most remarkable 12-year-old soul."

When I was a little girl, my mother used to tell me a fanciful little story. As the story went, when she was pregnant with me, she asked a friend to take a picture of her profile, to show her big belly.  When the picture was developed, there, captured on the film, in a perfect band around her belly, was a beautiful pink light.    She showed it to a wise friend, who said, "You know what this means?  This means that this child will be very special, with a very special purpose."  

I now look at this story as one of those little family myths -- like the Easter bunny, the tooth fairy, and statements like, "When I was your age I walked ten miles to school, in the snow, barefoot, uphill both ways." But in childhood, this story was a touchstone. 

You see, in her own unique way, my mother was teaching me about my own value.  Lacking the typical instincts that others use to verify the veracity of others' views -- life, for me, was a confusing cacophony of conflicting ideas and opinions.  I was not the type of kid to accept "Just take my word for it." To be so would make me vulnerable to every new opinion that came my way, worthy or not.

With her little story - my mother reframed an abstract concept, my worth, into something concrete that I could understand.  She made my worth real...and gave me a way to represent it, in my own language -- pictures.  Further, she was telling me that it was measurable...something that could be "seen."

I would go to it again and again.  When others teased me, made me feel a freak...I'd imagine the picture.   When I was sad, discouraged, tired, or just wanted to give up, I'd pull it up in my mind's eye, and remind myself, "You're special. You're unique. There's something you're here to do, that no-one else can do." It kept me going, gave me reason for hope.

Mattie Stepanek had a name for this concept - a person's special purpose or reason for being. He called it a person's "heartsong."  He followed his heartsong with more fervor, passion and joy than many experience in a lifetime.   Mattie said, "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift."

Mattie Stepanek with Former President Jimmy CarterHis hero, Former President Jimmy Carter called him "...the most remarkable person I have ever known," and wrote, "With the purity of heart that only a child can possess, and the indomitable spirit of one who has survived more physical suffering than most adults will ever know, Mattie convinced me that his quest [for peace] was not inconceivable."  

For Mattie, the barometer of his life was not the pain he felt, but what he learned and the contributions he made in the lives of others.  To me, that is the true value of a life.  It's not what you are born with that matters, it's what you choose to do with it.

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About the Author

Lynne Soraya

Lynne Soraya is a writer with Asperger's Syndrome. She is the author of Living Independently on the Autism Spectrum.

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